BABY Emma was just hours into her life when she started suffering seizures.
Eight months later and diagnosed with cerebral palsy, epilepsy and stalled mental development, her hope for a better quality of life is in the hands of European scientists.
Her family is hoping to raise $35,000 to take Emma to Germany to receive the latest stem cell treatment.
Her mother Doreen Deede told The Cairns Post her daughter struggled to swallow food, play with other children and even reach for toys.
"But there's hope with the stem cell treatment - it's not a miracle cure but it will just improve things for her," she said.
"Maybe she will even be able to speak or walk."
After complications during labour, Ms Deede barely had time to hold her newborn baby before doctors rushed her away for treatment.
"She was born all floppy and was a greyish-blue colour," Ms Deede said.
"She was not able to breathe and the doctors had to resuscitate her and so, she suffered some brain damage."
Just hours after the arrival of her first child, the Cairns single mother's life was thrown into turmoil, with Emma suffering seizures throughout her first night.
"Then when she was three or four months old she was diagnosed with cerebral palsy, epilepsy and her development is mentally delayed," Ms Deede said.
Having survived her tumultuous start, Emma now faces a new challenge to improve her future, with Ms Deede hoping to travel with her daughter to Germany next month to receive some of the latest stem cell therapy treatment.
The community has already banded behind mum and daughter to help raise the funds.
On Sunday, yoga-goers will stretch out their spines and open their wallets, performing 108 Sun Salutations at Knoff Yoga School from 7am.
In a final fundraiser, families will comb through clothes stalls, face painting and a petting zoo at a pre-loved toy sale at the Brothers Hockey Club in Calanna Park from 8am to 2pm on October 16.
While Emma's condition sees her struggle at meal times to swallow her food, play with other children or even reach for her toys, Ms Deede hopes the therapy will help her daughter gain some kind of independence as she grows older.
"I often think what kind of quality of life she will have in a wheelchair the rest of her life," she said.
"There are a lot of question marks."
At a cost of $10 those interested in participating in the 108 Sun Salutation event on Sunday can contact Joyce on 0429 322 896.
Further donations can be made by contacting The Cairns Post. Pledges will be passed on to Ms Deede.
Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts
08 October 2010
23 April 2010
Brain-Recording Device Could Herald Future Development For Monitoring And Controlling Seizures
19 Apr 2010
Scientists have developed a brain implant that essentially melts into place, snugly fitting to the brain's surface. The technology could pave the way for better devices to monitor and control seizures, and to transmit signals from the brain past damaged parts of the spinal cord.
"These implants have the potential to maximize the contact between electrodes and brain tissue, while minimizing damage to the brain. They could provide a platform for a range of devices with applications in epilepsy, spinal cord injuries and other neurological disorders," said Walter Koroshetz, M.D., deputy director of the National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health.
The study, published in Nature Materials, shows that the ultrathin flexible implants, made partly from silk, can record brain activity more faithfully than thicker implants embedded with similar electronics.
The simplest devices for recording from the brain are needle-like electrodes that can penetrate deep into brain tissue. More state-of-the-art devices, called micro-electrode arrays, consist of dozens of semi-flexible wire electrodes, usually fixed to rigid silicon grids that do not conform to the brain's shape.
In people with epilepsy, the arrays could be used to detect when seizures first begin, and deliver pulses to shut the seizures down. In people with spinal cord injuries, the technology has promise for reading complex signals in the brain that direct movement, and routing those signals to healthy muscles or prosthetic devices.
"The focus of our study was to make ultrathin arrays that conform to the complex shape of the brain, and limit the amount of tissue damage and inflammation," said Brian Litt, M.D., an author on the study and an associate professor of neurology at the University of Pennsylvania School of Medicine in Philadelphia. The silk-based implants developed by Dr. Litt and his colleagues can hug the brain like shrink wrap, collapsing into its grooves and stretching over its rounded surfaces.
The implants contain metal electrodes that are 500 microns thick, or about five times the thickness of a human hair. The absence of sharp electrodes and rigid surfaces should improve safety, with less damage to brain tissue. Also, the implants' ability to mold to the brain's surface could provide better stability; the brain sometimes shifts in the skull and the implant could move with it. Finally, by spreading across the brain, the implants have the potential to capture the activity of large networks of brain cells, Dr. Litt said.
Besides its flexibility, silk was chosen as the base material because it is durable enough to undergo patterning of thin metal traces for electrodes and other electronics. It can also be engineered to avoid inflammatory reactions, and to dissolve at controlled time points, from almost immediately after implantation to years later. The electrode arrays can be printed onto layers of polyimide (a type of plastic) and silk, which can then be positioned on the brain.
To make and test the silk-based implants, Dr. Litt collaborated with scientists at the University of Illinois in Urbana-Champaign and at Tufts University outside Boston. John Rogers, Ph.D., a professor of materials science and engineering at the University of Illinois, invented the flexible electronics. David Kaplan, Ph.D., and Fiorenzo Omenetto, Ph.D., professors of biomedical engineering at Tufts, engineered the tissue-compatible silk. Dr. Litt used the electronics and silk technology to design the implants, which were fabricated at the University of Illinois.
Recently, the team described a flexible silicon device for recording from the heart and detecting an abnormal heartbeat.
In the current study, the researchers approached the design of a brain implant by first optimizing the mechanics of silk films and their ability to hug the brain. They tested electrode arrays of varying thickness on complex objects, brain models and ultimately in the brains of living, anesthetized animals.
The arrays consisted of 30 electrodes in a 5x6 pattern on an ultrathin layer of polyimide - with or without a silk base. These experiments led to the development of an array with a mesh base of polyimide and silk that dissolves once it makes contact with the brain - so that the array ends up tightly hugging the brain.
Next, they tested the ability of these implants to record the animals' brain activity. By recording signals from the brain's visual center in response to visual stimulation, they found that the ultrathin polyimide-silk arrays captured more robust signals compared to thicker implants.
In the future, the researchers hope to design implants that are more densely packed with electrodes to achieve higher resolution recordings.
"It may also be possible to compress the silk-based implants and deliver them to the brain, through a catheter, in forms that are instrumented with a range of high performance, active electronic components," Dr. Rogers said.
The study received support from NINDS, NIH's National Institute of Biomedical Imaging and Bioengineering (NIBIB), the U.S. Department of Energy's Division of Materials Sciences, the U.S. Army, the Defense Advanced Research Projects Agency (DARPA), and the Klingenstein Foundation.
Source:
NIH/National Institute of Neurological Disorders and Stroke
Scientists have developed a brain implant that essentially melts into place, snugly fitting to the brain's surface. The technology could pave the way for better devices to monitor and control seizures, and to transmit signals from the brain past damaged parts of the spinal cord.
"These implants have the potential to maximize the contact between electrodes and brain tissue, while minimizing damage to the brain. They could provide a platform for a range of devices with applications in epilepsy, spinal cord injuries and other neurological disorders," said Walter Koroshetz, M.D., deputy director of the National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health.
The study, published in Nature Materials, shows that the ultrathin flexible implants, made partly from silk, can record brain activity more faithfully than thicker implants embedded with similar electronics.
The simplest devices for recording from the brain are needle-like electrodes that can penetrate deep into brain tissue. More state-of-the-art devices, called micro-electrode arrays, consist of dozens of semi-flexible wire electrodes, usually fixed to rigid silicon grids that do not conform to the brain's shape.
In people with epilepsy, the arrays could be used to detect when seizures first begin, and deliver pulses to shut the seizures down. In people with spinal cord injuries, the technology has promise for reading complex signals in the brain that direct movement, and routing those signals to healthy muscles or prosthetic devices.
"The focus of our study was to make ultrathin arrays that conform to the complex shape of the brain, and limit the amount of tissue damage and inflammation," said Brian Litt, M.D., an author on the study and an associate professor of neurology at the University of Pennsylvania School of Medicine in Philadelphia. The silk-based implants developed by Dr. Litt and his colleagues can hug the brain like shrink wrap, collapsing into its grooves and stretching over its rounded surfaces.
The implants contain metal electrodes that are 500 microns thick, or about five times the thickness of a human hair. The absence of sharp electrodes and rigid surfaces should improve safety, with less damage to brain tissue. Also, the implants' ability to mold to the brain's surface could provide better stability; the brain sometimes shifts in the skull and the implant could move with it. Finally, by spreading across the brain, the implants have the potential to capture the activity of large networks of brain cells, Dr. Litt said.
Besides its flexibility, silk was chosen as the base material because it is durable enough to undergo patterning of thin metal traces for electrodes and other electronics. It can also be engineered to avoid inflammatory reactions, and to dissolve at controlled time points, from almost immediately after implantation to years later. The electrode arrays can be printed onto layers of polyimide (a type of plastic) and silk, which can then be positioned on the brain.
To make and test the silk-based implants, Dr. Litt collaborated with scientists at the University of Illinois in Urbana-Champaign and at Tufts University outside Boston. John Rogers, Ph.D., a professor of materials science and engineering at the University of Illinois, invented the flexible electronics. David Kaplan, Ph.D., and Fiorenzo Omenetto, Ph.D., professors of biomedical engineering at Tufts, engineered the tissue-compatible silk. Dr. Litt used the electronics and silk technology to design the implants, which were fabricated at the University of Illinois.
Recently, the team described a flexible silicon device for recording from the heart and detecting an abnormal heartbeat.
In the current study, the researchers approached the design of a brain implant by first optimizing the mechanics of silk films and their ability to hug the brain. They tested electrode arrays of varying thickness on complex objects, brain models and ultimately in the brains of living, anesthetized animals.
The arrays consisted of 30 electrodes in a 5x6 pattern on an ultrathin layer of polyimide - with or without a silk base. These experiments led to the development of an array with a mesh base of polyimide and silk that dissolves once it makes contact with the brain - so that the array ends up tightly hugging the brain.
Next, they tested the ability of these implants to record the animals' brain activity. By recording signals from the brain's visual center in response to visual stimulation, they found that the ultrathin polyimide-silk arrays captured more robust signals compared to thicker implants.
In the future, the researchers hope to design implants that are more densely packed with electrodes to achieve higher resolution recordings.
"It may also be possible to compress the silk-based implants and deliver them to the brain, through a catheter, in forms that are instrumented with a range of high performance, active electronic components," Dr. Rogers said.
The study received support from NINDS, NIH's National Institute of Biomedical Imaging and Bioengineering (NIBIB), the U.S. Department of Energy's Division of Materials Sciences, the U.S. Army, the Defense Advanced Research Projects Agency (DARPA), and the Klingenstein Foundation.
Source:
NIH/National Institute of Neurological Disorders and Stroke
01 December 2009
Research Breaks New Ground For People With Epilepsy
30 Nov 2009
Pioneering research undertaken at the University of Sheffield has revealed that linguistic observations can help doctors differentiate between two of the most common causes of blackouts.
The news comes within National Epilepsy Month, which aims to raise awareness about epilepsy and promote tolerance and overall understanding of the condition.
The sociolinguistic study at the University, breaks completely new ground. Led by Markus Reuber, senior clinical lecturer and honorary consultant in the Academic Neurology Unit at the University of Sheffield, this is the first time conversation analysis has been shown to be capable of making a contribution to the differential diagnosis of superficially similar disorders.
The correct treatment of seizure disorders like epilepsy crucially depends on getting the diagnosis right. The three commonest causes of blackouts (epilepsy, fainting and non-epileptic attack disorder) require very different treatments. Whilst it is relatively easy to distinguish between epilepsy and fainting, it is very difficult to differentiate between epilepsy and non-epileptic attacks (NEA). Prior to this study, misdiagnosis frequencies of between 5 per cent and 50 per cent have been reported.
Epileptic seizures occur due to self-limited activity of neurons in the brain, characterised by recurrent epileptic seizures, while NEA are episodes of loss of control not associated with electrical discharges in the brain. Instead, NEA occur in response to distressing situations, sensations, emotions, thoughts or memories when alternative coping mechanisms are inadequate or have been overwhelmed. The treatment of choice for epilepsy involves antiepileptic drugs, while the first line treatment of NEA would be psychotherapy.
Researchers at the University independently analysed twenty first 30-minute doctor-patient encounters and focused on how patients with epilepsy and NEA talked to their doctor about their seizures, rather than what symptoms they mentioned. In these patients, the correct diagnosis had been proven by the simultaneous video and brainwave recording of a typical seizure. The study concentrated on aspects of the consultation which might otherwise be considered redundant by the doctor, such as the patient's willingness to volunteer information about their seizure experience, evidence of hesitation and reformulations of the information they were sharing with the doctor. These features proved very different between patients with epilepsy and NEA.
The findings showed that the patients with epilepsy tend to volunteer detailed first person accounts of seizures. In contrast, patients with NEA tend to resist focusing on individual seizure episodes and only provided seizure descriptions after repeated prompting by the doctor.
As a result, Markus Reuber and his team were able to correctly distinguish non-epileptic from epileptic seizures in 17 out of 20 cases, just by analysing the linguistic content of the transcript. It is now hoped that the groundbreaking research will allow patients to be more accurately diagnosed, as prior to this study, only 40 per cent of the patients investigated carried the correct diagnosis and received appropriate treatment.
Markus Reuber, senior clinical lecturer and honorary consultant in the Academic Neurology Unit at the University of Sheffield, said: "Neurologists see patients with epilepsy and non-epileptic attacks every week. The differentiation of epileptic and non-epileptic attacks is one of the most challenging tasks in the neurology outpatient clinic.
"This work does not only help neurologists with this difficult problem but also enables them to understand patients and their seizure experiences much better. I apply the insights I have gained from this research in my daily practice."
Dr Chiara M. Monzoni, linguist and post-doctoral research associate from the Academic Neurology Unit at the University of Sheffield, said: "Doctor-patient interaction has always been investigated through conversation analysis in order to understand how activities like decision making, diagnosis delivery or advice of treatment are actualized in interaction, in order for doctors to improve their daily practice.
"This study instead demonstrates that conversation analysis can help doctors in diagnostic processes which might be particularly challenging. It could be applied also to other difficult conditions as: anxiety/depression, headache/migraines, pain and amnesia so is particularly groundbreaking."
Source
University of Sheffield
--------------------------------------------------------------------------------
Article URL: http://www.medicalnewstoday.com/articles/172397.php
Pioneering research undertaken at the University of Sheffield has revealed that linguistic observations can help doctors differentiate between two of the most common causes of blackouts.
The news comes within National Epilepsy Month, which aims to raise awareness about epilepsy and promote tolerance and overall understanding of the condition.
The sociolinguistic study at the University, breaks completely new ground. Led by Markus Reuber, senior clinical lecturer and honorary consultant in the Academic Neurology Unit at the University of Sheffield, this is the first time conversation analysis has been shown to be capable of making a contribution to the differential diagnosis of superficially similar disorders.
The correct treatment of seizure disorders like epilepsy crucially depends on getting the diagnosis right. The three commonest causes of blackouts (epilepsy, fainting and non-epileptic attack disorder) require very different treatments. Whilst it is relatively easy to distinguish between epilepsy and fainting, it is very difficult to differentiate between epilepsy and non-epileptic attacks (NEA). Prior to this study, misdiagnosis frequencies of between 5 per cent and 50 per cent have been reported.
Epileptic seizures occur due to self-limited activity of neurons in the brain, characterised by recurrent epileptic seizures, while NEA are episodes of loss of control not associated with electrical discharges in the brain. Instead, NEA occur in response to distressing situations, sensations, emotions, thoughts or memories when alternative coping mechanisms are inadequate or have been overwhelmed. The treatment of choice for epilepsy involves antiepileptic drugs, while the first line treatment of NEA would be psychotherapy.
Researchers at the University independently analysed twenty first 30-minute doctor-patient encounters and focused on how patients with epilepsy and NEA talked to their doctor about their seizures, rather than what symptoms they mentioned. In these patients, the correct diagnosis had been proven by the simultaneous video and brainwave recording of a typical seizure. The study concentrated on aspects of the consultation which might otherwise be considered redundant by the doctor, such as the patient's willingness to volunteer information about their seizure experience, evidence of hesitation and reformulations of the information they were sharing with the doctor. These features proved very different between patients with epilepsy and NEA.
The findings showed that the patients with epilepsy tend to volunteer detailed first person accounts of seizures. In contrast, patients with NEA tend to resist focusing on individual seizure episodes and only provided seizure descriptions after repeated prompting by the doctor.
As a result, Markus Reuber and his team were able to correctly distinguish non-epileptic from epileptic seizures in 17 out of 20 cases, just by analysing the linguistic content of the transcript. It is now hoped that the groundbreaking research will allow patients to be more accurately diagnosed, as prior to this study, only 40 per cent of the patients investigated carried the correct diagnosis and received appropriate treatment.
Markus Reuber, senior clinical lecturer and honorary consultant in the Academic Neurology Unit at the University of Sheffield, said: "Neurologists see patients with epilepsy and non-epileptic attacks every week. The differentiation of epileptic and non-epileptic attacks is one of the most challenging tasks in the neurology outpatient clinic.
"This work does not only help neurologists with this difficult problem but also enables them to understand patients and their seizure experiences much better. I apply the insights I have gained from this research in my daily practice."
Dr Chiara M. Monzoni, linguist and post-doctoral research associate from the Academic Neurology Unit at the University of Sheffield, said: "Doctor-patient interaction has always been investigated through conversation analysis in order to understand how activities like decision making, diagnosis delivery or advice of treatment are actualized in interaction, in order for doctors to improve their daily practice.
"This study instead demonstrates that conversation analysis can help doctors in diagnostic processes which might be particularly challenging. It could be applied also to other difficult conditions as: anxiety/depression, headache/migraines, pain and amnesia so is particularly groundbreaking."
Source
University of Sheffield
--------------------------------------------------------------------------------
Article URL: http://www.medicalnewstoday.com/articles/172397.php
16 November 2009
We found we were not alone
Your world is turned on its head and suddenly even the everyday tasks that we all take for granted become so much harder.
She and husband, Bernard, are full-time carers for their grandson, Kyle.
The 12-year-old has cerebral palsy, epilepsy, asthma, global development delay and learning difficulties.
“Caring for a disabled child you tend not to go out and about as much,” says Mary, 61.
She considers the family lucky as Kyle is mobile, but she says: “People whose children are severely disabled can find it difficult to even go on the bus - simple things that we take for granted.”
That is why the Middlesbrough couple decided to join Parents 4 Change, a network that brings together parents, carers and service users to share their experiences and work alongside the professionals to find solutions to everyday challenges.
“We have learned an awful lot about different disabilities and how people cope,” says Mary. “It makes you feel as though you are not alone and it puts your own child’s disabilities into perspective.”
She and husband, Bernard, are full-time carers for their grandson, Kyle.
The 12-year-old has cerebral palsy, epilepsy, asthma, global development delay and learning difficulties.
“Caring for a disabled child you tend not to go out and about as much,” says Mary, 61.
She considers the family lucky as Kyle is mobile, but she says: “People whose children are severely disabled can find it difficult to even go on the bus - simple things that we take for granted.”
That is why the Middlesbrough couple decided to join Parents 4 Change, a network that brings together parents, carers and service users to share their experiences and work alongside the professionals to find solutions to everyday challenges.
“We have learned an awful lot about different disabilities and how people cope,” says Mary. “It makes you feel as though you are not alone and it puts your own child’s disabilities into perspective.”
15 October 2009
Rett Syndrome most disabling of all the autistic disorders
To the Editor:
Cumberland Times-News
I am writing, hoping you will help raise awareness about Rett Syndrome. It’s the leading cause of severe impairment in girls, yet the general public still doesn’t know about it. A baby girl is born every five hours with this debilitating disease.
Imagine: symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorders ... all in one little girl.
Our family does not have to imagine this, we are living it. My 21-year-old daughter Amanda was diagnosed with Rett Syndrome in February 1991.
Rett Syndrome is the most physically disabling disorder of the autism-spectrum disorders.
However, it’s the only autism-spectrum disorder with a known genetic cause. Primarily affecting girls, Rett Syndrome often strikes just after they have learned to walk, speak few words, and begins to drag their development backward.
This debilitating syndrome includes symptoms seen in many other severe neurological and neuropsychiatric disorders on which Rett research may shed light.
These include many of the following: regression, loss of speech, motor control and functional hand use; orthopedic problems including scoliosis and osteopenia; impaired cardiac, circulatory and digestive functions; autonomic instability and sleep disturbances; many varieties of seizures, often untreatable; autistic behaviors and sensory issues; Parkinsonian tremors; dystonia; anxiety and apraxia.
Currently, there are no effective treatments for Rett Syndrome. Most girls survive into adulthood and require total, 24-hour care. As of now there is no cure.
But, by raising awareness and continuing to fund research projects, we may be able to make a difference in the lives of girls with Rett Syndrome, and their families.
In 2007 the journal Science published the work of Adrian Bird, Ph.D., demonstrating the reversal of Rett Syndrome in mature mouse models with late-stage disease.
Days away from death, these animals recovered normal function and became indistinguishable from healthy mice in a matter of weeks.
This singular achievement has catapulted Rett into new realms of possibility and positions Rett Syndrome to be the first curable childhood neurological disorder. Rett Syndrome, unlike so many disorders (autism, Alzheimer’s, Parkinson, MS, etc.) has unique advantages: a known cause (a gene, known as MECP2), excellent animal models that faithfully mimic the human disorder, the prospect of reversibility and fast-paced research progress in the last few years.
There are clear treatment approaches that are currently being explored. The ideas, people and projects are in place. Funding is needed to execute this critical work.
As printed in a www.eurekalert.org/
pub_releases/2009-09/irsf-iaf092109.php public release announcement:
On Sept. 21, 2009, the International Rett Syndrome Foundation announced that it will provide $200,000 in 2009 to support a newly proposed clinical trial with a growth-factor based treatment for Rett Syndrome.
The study will be carried out by a team of clinical trials specialists at the Boston Children’s Hospital, led by Dr. Omar Khwaja MD, PhD and will be the first potentially disease modifying therapy ever to be tested in Rett Syndrome patients. Investigators will test a drug called Increlex.
“We are pleased to announce the funding of this groundbreaking new clinical study which presents a novel therapeutic strategy for the treatment of Rett Syndrome” said Dr. Antony Horton chief scientific officer at the International Rett Syndrome Foundation.
“This study will be carried out by a collaborative network of leading clinicians and neuroscientists in some of the World’s most prestigious research institutes at the cutting edge of biomedical research. Through our funding of this study we demonstrate our commitment to moving forward the most advanced treatments to prevent, treat and ultimately reverse Rett syndrome,” he said.
Ronna Reid
Rawlings
Cumberland Times-News
I am writing, hoping you will help raise awareness about Rett Syndrome. It’s the leading cause of severe impairment in girls, yet the general public still doesn’t know about it. A baby girl is born every five hours with this debilitating disease.
Imagine: symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorders ... all in one little girl.
Our family does not have to imagine this, we are living it. My 21-year-old daughter Amanda was diagnosed with Rett Syndrome in February 1991.
Rett Syndrome is the most physically disabling disorder of the autism-spectrum disorders.
However, it’s the only autism-spectrum disorder with a known genetic cause. Primarily affecting girls, Rett Syndrome often strikes just after they have learned to walk, speak few words, and begins to drag their development backward.
This debilitating syndrome includes symptoms seen in many other severe neurological and neuropsychiatric disorders on which Rett research may shed light.
These include many of the following: regression, loss of speech, motor control and functional hand use; orthopedic problems including scoliosis and osteopenia; impaired cardiac, circulatory and digestive functions; autonomic instability and sleep disturbances; many varieties of seizures, often untreatable; autistic behaviors and sensory issues; Parkinsonian tremors; dystonia; anxiety and apraxia.
Currently, there are no effective treatments for Rett Syndrome. Most girls survive into adulthood and require total, 24-hour care. As of now there is no cure.
But, by raising awareness and continuing to fund research projects, we may be able to make a difference in the lives of girls with Rett Syndrome, and their families.
In 2007 the journal Science published the work of Adrian Bird, Ph.D., demonstrating the reversal of Rett Syndrome in mature mouse models with late-stage disease.
Days away from death, these animals recovered normal function and became indistinguishable from healthy mice in a matter of weeks.
This singular achievement has catapulted Rett into new realms of possibility and positions Rett Syndrome to be the first curable childhood neurological disorder. Rett Syndrome, unlike so many disorders (autism, Alzheimer’s, Parkinson, MS, etc.) has unique advantages: a known cause (a gene, known as MECP2), excellent animal models that faithfully mimic the human disorder, the prospect of reversibility and fast-paced research progress in the last few years.
There are clear treatment approaches that are currently being explored. The ideas, people and projects are in place. Funding is needed to execute this critical work.
As printed in a www.eurekalert.org/
pub_releases/2009-09/irsf-iaf092109.php public release announcement:
On Sept. 21, 2009, the International Rett Syndrome Foundation announced that it will provide $200,000 in 2009 to support a newly proposed clinical trial with a growth-factor based treatment for Rett Syndrome.
The study will be carried out by a team of clinical trials specialists at the Boston Children’s Hospital, led by Dr. Omar Khwaja MD, PhD and will be the first potentially disease modifying therapy ever to be tested in Rett Syndrome patients. Investigators will test a drug called Increlex.
“We are pleased to announce the funding of this groundbreaking new clinical study which presents a novel therapeutic strategy for the treatment of Rett Syndrome” said Dr. Antony Horton chief scientific officer at the International Rett Syndrome Foundation.
“This study will be carried out by a collaborative network of leading clinicians and neuroscientists in some of the World’s most prestigious research institutes at the cutting edge of biomedical research. Through our funding of this study we demonstrate our commitment to moving forward the most advanced treatments to prevent, treat and ultimately reverse Rett syndrome,” he said.
Ronna Reid
Rawlings
09 October 2009
Philosophy Now | Reflections On Epilepsy
Raymond Tallis applies his mind to his mind.
My experience with neurological patients has underlined what ordinary life tells us: that a brain in some working order is a necessary condition for human consciousness. Unlike mind-brain identity theorists, however, I do not believe that consciousness is identical with neural activity in the cerebral cortex, the brain stem, the thalamus or wherever. This does not mean that I think I have an immaterial soul; nor do I subscribe to a ‘ghost-in-the-machine’ Cartesian dualism. Rather, I am a non-Cartesian atheist who just can’t help noticing that however hard you look, you will not find sensations, affections and reasons in bits of the brain, or even distributed throughout the brain. So although a functioning brain is necessary for every aspect of consciousness, from the simplest twinge of sensation to the most exquisitely constructed sense of self, it is not sufficient for consciousness – and certainly not for the kind of consciousness you and I enjoy.
Philosophy Now | Reflections On Epilepsy
My experience with neurological patients has underlined what ordinary life tells us: that a brain in some working order is a necessary condition for human consciousness. Unlike mind-brain identity theorists, however, I do not believe that consciousness is identical with neural activity in the cerebral cortex, the brain stem, the thalamus or wherever. This does not mean that I think I have an immaterial soul; nor do I subscribe to a ‘ghost-in-the-machine’ Cartesian dualism. Rather, I am a non-Cartesian atheist who just can’t help noticing that however hard you look, you will not find sensations, affections and reasons in bits of the brain, or even distributed throughout the brain. So although a functioning brain is necessary for every aspect of consciousness, from the simplest twinge of sensation to the most exquisitely constructed sense of self, it is not sufficient for consciousness – and certainly not for the kind of consciousness you and I enjoy.
Philosophy Now | Reflections On Epilepsy
18 September 2009
Medikidz comic heroes to help children understand diseases and treatment
Sam Lister
A team of comic-book superheroes living inside the human body is to be used to help children understand complex diseases affecting them or their parents and reduce fear surrounding treatment and side-effects.
A children’s medical publisher is to be launched this week in London, supported by leading paediatricians, celebrities and campaigners including Archbishop Desmond Tutu, to tackle poor understanding of disease among the young.
The project, called Medikidz, will provide a range of comic books explaining diseases such as leukaemia, scoliosis, asthma and epilepsy that affect children, as well as those prevalent in adults, such as breast cancer and depression. A national catering company has ordered 100,000 advance copies of a title on childhood obesity for distribution in UK schools.
The superheroes include characters based on the cardiovascular and gastrointestinal systems, the lungs, brain and skin and bone who take the reader on an adventure explaining their condition and the treatments they are likely to receive. Children will also be able to find out more from a website which will offer social networking to allow young patients to share their experiences.
The project, which will be launched at the Evelina Children’s Hospital at St Thomas’ Hospital on Wednesday, has been set up by two junior doctors frustrated by the lack of child-friendly information available. Backers include the musician Will.i.am from the Black Eyed Peas, Jacqueline Wilson, the children’s author, and Archbishop Tutu, who is due to address the launch.
The comic books are aimed at children between the ages of 8 and 15.
Kim Chilman-Blair, Medikidz founder, said that she had first noticed the problem while training in paediatrics at Otago Medical School in New Zealand. “I was looking after an eight-year old epileptic girl, and trying to explain her condition to her,” she said. “It was very difficult. I went and asked the consultant if there was any material that I could use, and there wasn’t anything. It started me thinking.
“When children fall ill they naturally look to adults for courage, comfort and explanation. In most cases these adults are unprepared and unqualified to deal with these situations and they have no useful information to give to young people to explain what is happening to them.”
Paediatricians said that they agreed that there was a paucity of engaging material for the young, with parents too often told of the problem and left to explain what was going on to their children. They said that being properly informed should be central to a child’s treatment.
Professor Ricky Richardson, a leading paediatrician and government adviser, said: “There is an enormous need to provide appropriate information about disease processes to children in a form they understand. Having this in comic book format and using social networking technology will be enormous step forward.”
Prof Richardson, who sees patients at Great Ormond Street Hospital for Children and Princess Margaret Hospital in Windsor, and is chair of the Medikidz medical advisory board, said.
“It moves the focus away from parents to children. The psychology of the relationship between parents and children can complicate things, because parents will naturally protect their children and may not pass on information to them. But in fact that child can gain much more from properly understanding where they are and what’s happening to them.”
Dr Chilman-Blair and Kate James, the company’s co-founder, said that the focus would also be on developing countries, with titles covering major paediatric diseases such as HIV/Aids and tuberculosis. Every book, which is designed by a former Marvel comic book writer, is subject to clinical peer review by paediatricians and specialist nurses.
Archbishop Tutu, a campaigner for health and human rights who has been particularly vocal in support of controlling TB and HIV, is known to be a keen supporter of the venture. He is scheduled to address the launch of the programme. He said: “It is extremely important that they feel reassured, informed and included during the diagnosis and treatment process, and this initiative should be supported for helping to achieve this,” he said.
A team of comic-book superheroes living inside the human body is to be used to help children understand complex diseases affecting them or their parents and reduce fear surrounding treatment and side-effects.
A children’s medical publisher is to be launched this week in London, supported by leading paediatricians, celebrities and campaigners including Archbishop Desmond Tutu, to tackle poor understanding of disease among the young.
The project, called Medikidz, will provide a range of comic books explaining diseases such as leukaemia, scoliosis, asthma and epilepsy that affect children, as well as those prevalent in adults, such as breast cancer and depression. A national catering company has ordered 100,000 advance copies of a title on childhood obesity for distribution in UK schools.
The superheroes include characters based on the cardiovascular and gastrointestinal systems, the lungs, brain and skin and bone who take the reader on an adventure explaining their condition and the treatments they are likely to receive. Children will also be able to find out more from a website which will offer social networking to allow young patients to share their experiences.
The project, which will be launched at the Evelina Children’s Hospital at St Thomas’ Hospital on Wednesday, has been set up by two junior doctors frustrated by the lack of child-friendly information available. Backers include the musician Will.i.am from the Black Eyed Peas, Jacqueline Wilson, the children’s author, and Archbishop Tutu, who is due to address the launch.
The comic books are aimed at children between the ages of 8 and 15.
Kim Chilman-Blair, Medikidz founder, said that she had first noticed the problem while training in paediatrics at Otago Medical School in New Zealand. “I was looking after an eight-year old epileptic girl, and trying to explain her condition to her,” she said. “It was very difficult. I went and asked the consultant if there was any material that I could use, and there wasn’t anything. It started me thinking.
“When children fall ill they naturally look to adults for courage, comfort and explanation. In most cases these adults are unprepared and unqualified to deal with these situations and they have no useful information to give to young people to explain what is happening to them.”
Paediatricians said that they agreed that there was a paucity of engaging material for the young, with parents too often told of the problem and left to explain what was going on to their children. They said that being properly informed should be central to a child’s treatment.
Professor Ricky Richardson, a leading paediatrician and government adviser, said: “There is an enormous need to provide appropriate information about disease processes to children in a form they understand. Having this in comic book format and using social networking technology will be enormous step forward.”
Prof Richardson, who sees patients at Great Ormond Street Hospital for Children and Princess Margaret Hospital in Windsor, and is chair of the Medikidz medical advisory board, said.
“It moves the focus away from parents to children. The psychology of the relationship between parents and children can complicate things, because parents will naturally protect their children and may not pass on information to them. But in fact that child can gain much more from properly understanding where they are and what’s happening to them.”
Dr Chilman-Blair and Kate James, the company’s co-founder, said that the focus would also be on developing countries, with titles covering major paediatric diseases such as HIV/Aids and tuberculosis. Every book, which is designed by a former Marvel comic book writer, is subject to clinical peer review by paediatricians and specialist nurses.
Archbishop Tutu, a campaigner for health and human rights who has been particularly vocal in support of controlling TB and HIV, is known to be a keen supporter of the venture. He is scheduled to address the launch of the programme. He said: “It is extremely important that they feel reassured, informed and included during the diagnosis and treatment process, and this initiative should be supported for helping to achieve this,” he said.
23 August 2009
Welsh scientists make epilepsy research breakthrough
ONE of Rome’s greatest warriors, Julius Caesar, suffered from it, as did French Emperor Napoleon and Greek philosopher Socrates.
Now, research by Welsh scientists could lead to radical new treatments for epilepsy.
Half of all cases of the condition are linked to an obvious cause such as a head injury, brain tumour or another neurological disease.
In almost all other cases the condition is believed to have a genetic basis – but so far little progress has been made in identifying the genes responsible.
However, the latest study by the researchers from Swansea University, working with counterparts from the University of Leeds – published this week in the journal PNAS (Proceedings of the National Academy of Sciences) – shows that a mutation in a gene called ATP1A3 can lead to a severe form of epilepsy in mice.
If the findings translate to human beings, they could pave the way for more effective treatments that could in the future make inherited epilepsy a thing of the past.
The study has shown that inherited epilepsy can be halted by silencing the gene responsible for its development.
Professor Mark Rees, leader of the Swansea University arm of the joint research project, said clinical trials are to start soon.
He said: “This study has a great deal of potential for the development of specifically tailored drugs to treat epilepsy. Dr Steve Clapcote (leader of the Leeds University researchers) and I have been working together for some time screening an archive of DNA samples from epileptic patients and we are now applying for grant funding to move forward into clinical trials.
“I am very much looking forward to the results of these trials as results to date are very promising indeed.”
The scientists studied a strain of mouse called Myshkin, which has an inherited form of severe epilepsy.
The mice were found to have a defective version of the gene ATP1A3 which led them to suffer spontaneous seizures.
Researchers managed to breed the defect out of epileptic mice by balancing “good” and “bad” genes – the researchers found genes without the defective version of ATP1A3 cancelled out genes with it during breeding.
Dr Clapcote said: “Our study has identified a new way in which epilepsy can be caused and prevented in mice, and therefore it may provide clues to potential causes, therapies and preventative measures in human epilepsy.”
The human equivalent of the mouse gene matched it by more than 99%, he added.
Simon Wigglesworth, deputy chief executive of the charity Epilepsy Action, welcomed the research yesterday, saying: “This is encouraging news, although it is too early to say whether this treatment will work for humans.
“At the moment there is no treatment to cure epilepsy, other than surgery, which is only effective for small numbers.”
Epilepsy is currently defined as a tendency to have recurrent seizures (sometimes called fits).
A seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the normal messages passing between brain cells.
This disruption results in the brain’s messages becoming halted or mixed up.
The ancient approach to epilepsy was that it was caused by demons and could be cured by magic or prayers.
Early sufferers such as Julius Caesar, who had a family history of seizures, did their best to hide the affliction as it was seen as a damaging weakness.
Hippocrates was one of the first physicians to recognise it as a physical ailment.
Famous people with epilepsy include:
Kyffin Williams, the Welsh landscape painter, had to end his army career due to epilepsy.
Vladimir Lenin, First Premier of the Soviet Union. His final year was characterised by neurological decline and in his last few months, he developed epilepsy. His seizures worsened and he died in status epilepticus, which had lasted 50 minutes.
Canadian singer songwriter Neil Young, 63, disliked the effects of his medication for the condition and sought “personal stability” as an alternative means of control.
Mike Skinner, 31, frontman of The Streets, had epilepsy between the ages of seven and 20.
Former cricket star Tony Greig, who is involved with Epilepsy Action Australia, had his first seizure aged 14, during a tennis game, but has successfully controlled his epilepsy with medication.
Boxer Terry Marsh, 51,was IBF world light-welterweight champion but his diagnosis of epilepsy in 1987, aged 29, forced him into retirement undefeated.
Max Clifford, 66, the publicist, developed epilepsy at the age of 46.
Laurie Lee, the writer most famous for his autobiographical trilogy, which includes Cider with Rosie, developed epilepsy after he was knocked down by a bicycle at the age of 10. He kept it secret and it only surfaced when his papers were read by biographers after his death.
Now, research by Welsh scientists could lead to radical new treatments for epilepsy.
Half of all cases of the condition are linked to an obvious cause such as a head injury, brain tumour or another neurological disease.
In almost all other cases the condition is believed to have a genetic basis – but so far little progress has been made in identifying the genes responsible.
However, the latest study by the researchers from Swansea University, working with counterparts from the University of Leeds – published this week in the journal PNAS (Proceedings of the National Academy of Sciences) – shows that a mutation in a gene called ATP1A3 can lead to a severe form of epilepsy in mice.
If the findings translate to human beings, they could pave the way for more effective treatments that could in the future make inherited epilepsy a thing of the past.
The study has shown that inherited epilepsy can be halted by silencing the gene responsible for its development.
Professor Mark Rees, leader of the Swansea University arm of the joint research project, said clinical trials are to start soon.
He said: “This study has a great deal of potential for the development of specifically tailored drugs to treat epilepsy. Dr Steve Clapcote (leader of the Leeds University researchers) and I have been working together for some time screening an archive of DNA samples from epileptic patients and we are now applying for grant funding to move forward into clinical trials.
“I am very much looking forward to the results of these trials as results to date are very promising indeed.”
The scientists studied a strain of mouse called Myshkin, which has an inherited form of severe epilepsy.
The mice were found to have a defective version of the gene ATP1A3 which led them to suffer spontaneous seizures.
Researchers managed to breed the defect out of epileptic mice by balancing “good” and “bad” genes – the researchers found genes without the defective version of ATP1A3 cancelled out genes with it during breeding.
Dr Clapcote said: “Our study has identified a new way in which epilepsy can be caused and prevented in mice, and therefore it may provide clues to potential causes, therapies and preventative measures in human epilepsy.”
The human equivalent of the mouse gene matched it by more than 99%, he added.
Simon Wigglesworth, deputy chief executive of the charity Epilepsy Action, welcomed the research yesterday, saying: “This is encouraging news, although it is too early to say whether this treatment will work for humans.
“At the moment there is no treatment to cure epilepsy, other than surgery, which is only effective for small numbers.”
Epilepsy is currently defined as a tendency to have recurrent seizures (sometimes called fits).
A seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the normal messages passing between brain cells.
This disruption results in the brain’s messages becoming halted or mixed up.
The ancient approach to epilepsy was that it was caused by demons and could be cured by magic or prayers.
Early sufferers such as Julius Caesar, who had a family history of seizures, did their best to hide the affliction as it was seen as a damaging weakness.
Hippocrates was one of the first physicians to recognise it as a physical ailment.
Famous people with epilepsy include:
Kyffin Williams, the Welsh landscape painter, had to end his army career due to epilepsy.
Vladimir Lenin, First Premier of the Soviet Union. His final year was characterised by neurological decline and in his last few months, he developed epilepsy. His seizures worsened and he died in status epilepticus, which had lasted 50 minutes.
Canadian singer songwriter Neil Young, 63, disliked the effects of his medication for the condition and sought “personal stability” as an alternative means of control.
Mike Skinner, 31, frontman of The Streets, had epilepsy between the ages of seven and 20.
Former cricket star Tony Greig, who is involved with Epilepsy Action Australia, had his first seizure aged 14, during a tennis game, but has successfully controlled his epilepsy with medication.
Boxer Terry Marsh, 51,was IBF world light-welterweight champion but his diagnosis of epilepsy in 1987, aged 29, forced him into retirement undefeated.
Max Clifford, 66, the publicist, developed epilepsy at the age of 46.
Laurie Lee, the writer most famous for his autobiographical trilogy, which includes Cider with Rosie, developed epilepsy after he was knocked down by a bicycle at the age of 10. He kept it secret and it only surfaced when his papers were read by biographers after his death.
02 July 2009
Do we know the power of Yoga?
Caroline Phillips
24.06.09 One woman has thrown away the wheelchair to which she was confined for two years.
She suffered from ME (chronic fatigue) for 15 years and now, confounding medical orthodoxy, is symptom-free.
Another patient says he endured asthma intermittently for 30 years - and is now cured.
Improbably, both say their transformation is down to yoga. They are not alone, because many major health benefits are now being claimed for the discipline.
The number of people practising in Britain has tripled in the past decade and now the first NHS yoga facility in a primary healthcare centre has opened in London's Kentish Town.
"It specialises in yoga for diabetes, back pain and breathing difficulties," says its founder, biochemist Dr Robin Monro, also founder of the Yoga Biomedical Trust, which runs clinical trials into yoga and offers lessons.
A recent study showed that yoga can significantly lower levels of triglycerides - the fats in your blood which if elevated can lead to heart disease.
Another concluded that yoga can increase brain gamma-aminobutyric levels, which when lowered are associated with depression, anxiety, epilepsy and even Alzheimer's.
It's also known to lower blood pressure, cholesterol levels and improve memory, sleep, energy, gastrointestinal function and tolerance to pain. In some instances, chronic pain can be eliminated.
Jo Manuel is a practitioner who helps sufferers of illnesses from muscular dystrophy to Parkinson's.
In 2004, she founded the Special Yoga Centre and launched Yoga for the Special Child, a unique service in Britain for disabled children.
For a small, charitable facility in Kensal Rise, it punches way above its weight - Jo's techniques have been adopted by all New York's special-needs schools.
It was to the SYC that Samantha Cameron took her and David's late son, Ivan, who suffered from cerebral palsy and epilepsy. "Sam said yoga helped her son relax and find more peace in his body," says Jo.
Last month SYC held a charity art auction and raised a whopping £100,000 - with artists from Marc Quinn to Sam Taylor-Wood personally donating works - to fund its work.
Television presenter Gaby Roslin said: "I've watched Jo working with autistic children. I'm astounded by what she achieves with kids who can't normally even make eye contact or sit still."
The centre teaches several forms of yoga, from ashtanga to kundalini, in general classes and has 40 instructors.
There are special classes for adults with everything from ME to MS and sessions for pre-natal teenagers. Jo's speciality, a hatha-based practice, is the one she uses to treat 350 special-needs children a week.
Jo believes yoga has a positive effect on even the most serious illnesses. Fiona Agombar, a former high-flying executive and author of Beat Fatigue Through Yoga, is one of the centre's teachers.
"I had ME for 15 years, I was in hospital for months with appalling fatigue and muscular pain, and in a wheelchair for two years.
"The medical view is that after five years with ME, you don't get better," she says. "With yoga, I've become symptom-free. Last year I went trekking in Nepal."
So can yoga cure any illness? "MS, for example, isn't going to be stopped by it," says Jo. "But it can slow the degeneration and help sufferers manage the pain. I also see Down's children meeting their developmental milestones earlier than those who don't do yoga."
Dr Monro believes more investigation is necessary if yoga is to be accepted as a part of everyday healthcare.
For Jo, however, success is measured in smaller steps, such as when the mother of one disabled girl who attends SYC told her recently that thanks to Jo's yoga classes her daughter had slept properly for the first time in nine years.
Special Yoga Centre, The Tay Building, 2A Wrentham Avenue, NW10 (020 8968 1900, www.specialyoga.org.uk).
Pamper Evening 26 June, 5pm-10pm, £5 entry fee, treatments from reflexology to Indian head massage.
For donations visit www.justgiving.com/syc/donate
24.06.09 One woman has thrown away the wheelchair to which she was confined for two years.
She suffered from ME (chronic fatigue) for 15 years and now, confounding medical orthodoxy, is symptom-free.
Another patient says he endured asthma intermittently for 30 years - and is now cured.
Improbably, both say their transformation is down to yoga. They are not alone, because many major health benefits are now being claimed for the discipline.
The number of people practising in Britain has tripled in the past decade and now the first NHS yoga facility in a primary healthcare centre has opened in London's Kentish Town.
"It specialises in yoga for diabetes, back pain and breathing difficulties," says its founder, biochemist Dr Robin Monro, also founder of the Yoga Biomedical Trust, which runs clinical trials into yoga and offers lessons.
A recent study showed that yoga can significantly lower levels of triglycerides - the fats in your blood which if elevated can lead to heart disease.
Another concluded that yoga can increase brain gamma-aminobutyric levels, which when lowered are associated with depression, anxiety, epilepsy and even Alzheimer's.
It's also known to lower blood pressure, cholesterol levels and improve memory, sleep, energy, gastrointestinal function and tolerance to pain. In some instances, chronic pain can be eliminated.
Jo Manuel is a practitioner who helps sufferers of illnesses from muscular dystrophy to Parkinson's.
In 2004, she founded the Special Yoga Centre and launched Yoga for the Special Child, a unique service in Britain for disabled children.
For a small, charitable facility in Kensal Rise, it punches way above its weight - Jo's techniques have been adopted by all New York's special-needs schools.
It was to the SYC that Samantha Cameron took her and David's late son, Ivan, who suffered from cerebral palsy and epilepsy. "Sam said yoga helped her son relax and find more peace in his body," says Jo.
Last month SYC held a charity art auction and raised a whopping £100,000 - with artists from Marc Quinn to Sam Taylor-Wood personally donating works - to fund its work.
Television presenter Gaby Roslin said: "I've watched Jo working with autistic children. I'm astounded by what she achieves with kids who can't normally even make eye contact or sit still."
The centre teaches several forms of yoga, from ashtanga to kundalini, in general classes and has 40 instructors.
There are special classes for adults with everything from ME to MS and sessions for pre-natal teenagers. Jo's speciality, a hatha-based practice, is the one she uses to treat 350 special-needs children a week.
Jo believes yoga has a positive effect on even the most serious illnesses. Fiona Agombar, a former high-flying executive and author of Beat Fatigue Through Yoga, is one of the centre's teachers.
"I had ME for 15 years, I was in hospital for months with appalling fatigue and muscular pain, and in a wheelchair for two years.
"The medical view is that after five years with ME, you don't get better," she says. "With yoga, I've become symptom-free. Last year I went trekking in Nepal."
So can yoga cure any illness? "MS, for example, isn't going to be stopped by it," says Jo. "But it can slow the degeneration and help sufferers manage the pain. I also see Down's children meeting their developmental milestones earlier than those who don't do yoga."
Dr Monro believes more investigation is necessary if yoga is to be accepted as a part of everyday healthcare.
For Jo, however, success is measured in smaller steps, such as when the mother of one disabled girl who attends SYC told her recently that thanks to Jo's yoga classes her daughter had slept properly for the first time in nine years.
Special Yoga Centre, The Tay Building, 2A Wrentham Avenue, NW10 (020 8968 1900, www.specialyoga.org.uk).
Pamper Evening 26 June, 5pm-10pm, £5 entry fee, treatments from reflexology to Indian head massage.
For donations visit www.justgiving.com/syc/donate
10 June 2009
13 March 2009
To China for a cure
Mar 9, 2009 by Alexandra Shimo
China is not normally considered a world leader in surgical advances, but according to a number of its doctors (and the Canadian patients they’ve treated), it has leapfrogged ahead in stem cell treatments. A growing number of people are travelling to China for a $30,000 experimental treatment: stem cell injections. Most, like New Brunswicker Jean Christophe Haas, 40, decide to go because they have a debilitating illness and there isn’t much that Western medicine can do for them.
Haas has Machado-Joseph disease (MJD), a terminal neuromuscular disease that affects the body in a similar way to Parkinson’s, paralyzing it gradually. Although he was diagnosed 20 years ago, it took some years for the symptoms to become noticeable. At first, only his sense of balance and his coordination were affected. Then his speech began to suffer and he started slurring his words. In 2004, he had to stop work as an army mechanic because his motor skills were no longer up to par and, in the past couple of years, he started seeing double. His family felt an overwhelming sense of panic, especially because Haas’s mother had the same disease, and his grandmother died of it. His desperation was compounded by the sense that Canadian doctors had given up on him completely; one told him there was nothing to do but to accept his fate of an early death, says his wife, Cherie Haas. “It’s awful for a young man with a family to go in and hear that. It’s heartbreaking.”
Ms. Haas searched the Web and found stories of other MJD patients who seemed to have been helped by stem cell therapy at various Chinese hospitals. Many of these good news stories are posted on personal blogs or on the websites of the clinics offering the treatments. There are thousands of these testimonials, suggesting that hundreds of people go every year, says Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta, who has published studies on this issue.
Advertising on the Internet, these Chinese medical centres promise to treat a surprisingly extensive range of diseases and conditions, including ALS, autism, brain injuries, cerebral palsy, epilepsy, multiple sclerosis, Parkinson’s, spinal muscular atrophy, septo-optic dysplasia (which can cause seeing difficulties, blindness and mental retardation), spinal cord injuries and stroke. Foreigners are a major source of funds for the clinics. Some doctors like Dr. Huang Hongyun, a neuroscientist at Beijing Xishan Hospital, have treated many patients from outside China, including some from Canada, and he has published a number of papers in Chinese medical journals tracking patients pre- and post-procedure. And yet some North American doctors are critical of how the data was compiled, and skeptical of the treatments on offer.
Once Jean Haas decided to go, he told his plans to Guy Rouleau, a neurologist at Centre Hospitalier de l’Université de Montréal, who said there were slight risks of complications, and that it would probably be a waste of money. But otherwise he didn’t try to dissuade him. Raising the money for the trip was easier than expected: much of the town of Oromocto, N.B., pitched in to raise the $30,000, with neighbours’ kids shovelling driveways to help out, and the military and community organizations hosting breakfasts and fundraisers. In April 2007, he and his wife travelled to Shenzhen, China, and stayed a little more than a month. During that time, Haas had six injections of stem cells into his spine, and an intense program of physiotherapy, exercise, massage and acupuncture. The results were immediate, he says—his balance improved just a few hours after the first procedure. Back in Canada, his neurologist confirmed that Haas had indeed gotten better: he had about 10 to 15 per cent more movement, according to Rouleau, who examined him before and after the trip. It’s difficult to speculate why this occurred, but Rouleau believes the intense physiotherapy was the primary cause.
When the couple returned from China, they wrote about their experience on the Web. Word got around, and soon hundreds of people were calling them, Cherie says. A couple whose husband had a similar neurodegenerative disease even drove from Quebec to see them, and the man subsequently decided to make the stem cell trip. Another couple flew in from Taber, Alta., and decided to go to China after seeing the home videos of Haas’s progress. Those gains were partly due to the attitude of Chinese doctors, Cherie believes. They would tell Haas to push himself to his limit and even try to “retrain his brain,” she explains. “We saw miracles while we were over there. We put the word out because I know this works.”
Even if patients experience gains, it’s important to determine whether they are from the treatment, the exercise program or a more positive frame of mind. Any advances could be merely the placebo effect, as people often feel better after being treated, even if the procedure hasn’t worked and the gains won’t last, explains John Steeves, a professor at the college for interdisciplinary studies at the University of British Columbia who specializes in spinal cord injuries. Finding out whether any treatment really works requires clinical trials, and although Dr. Huang has published the results of his trials in Chinese medical journals, this data does not conform to international standards of medical analysis. Indeed, Steeves believes Huang deliberately flouts these standards to help his bottom line. “Dr. Huang has no interest doing a valid clinical trial because if it doesn’t give him good results, his income would dry up immediately,” he says from his Vancouver office.
Patients, like Haas, who seem to have been helped by stem cell treatments, are often eager to share their stories. They may become advocates for the Chinese medical centres; Haas’s story is publicized on the website of the company that organized his medical tourism trip. By contrast, it’s more difficult to find people who haven’t gotten better, or are worse after spending $30,000 on an experimental procedure. This might be because they feel duped, or because the Chinese stem cell treatment emphasizes empowerment—a “you can do it attitude.” Those who can’t “do it,” who go through the rigorous training program and end up no better off, may feel unlucky, cheated, or they may take the lack of success personally and feel that they have somehow failed.
Missouri resident Jeff Carneal, 38, doesn’t feel like a failure, but having spent so much money, he is frustrated and disappointed. He lost the use of his legs when he fell off a stepladder while fixing his father’s barn. He has spent the past six years working with different doctors trying to learn to walk again, even flying to Quito, Ecuador, for an experimental operation (nerves were removed from his legs and grafted onto his spinal cord, which cost a lot, but didn’t really help). When a Maclean’s reporter first met Carneal at the Beijing Xishan Hospital after stem cell treatment, he was enthusiastic and believed the operation he’d had a couple of weeks earlier had alleviated some of the shearing leg pain he’d felt ever since his accident. But when contacted a few weeks after he returned to the United States, he was more downbeat, and said the operation hadn’t really made any difference.
Negative outcomes aren’t widely reported, but they are more common than the Chinese hospitals would have you think, says James Guest, a professor of neurological surgery at the University of Miami. He visited Huang in Beijing in the summer of 2004 to sample and test the fluid being injected into foreign patients. The results were inconclusive, he says. Following this, he went a step further, and examined spinal cord injury patients pre- and post-treatment in China. The results, published in 2006 in the journal Neurorehabilitation and Neural Repair, make clear the difference between what the doctors see and what patients want to believe. Of the seven, six thought they recovered some limb movement, although in most cases the physicians measured very little difference.
A few had concrete gains: a 19-year-old had chronic, burning back pain that eased enough for the patient to stop taking painkillers. Another patient had fewer muscle spasms after the procedure and could angle his left hand a little more, although he phoned Guest six months later to say the surgery had not made any permanent difference. On the downside, there were also post-treatment complications: a 22-year-old contracted meningitis, pneumonia and gastrointestinal bleeding, which were managed with heavy medications, and another had a fever and confusion along with a drug rash. Guest is critical of the Chinese stem cell treatments: he believes some doctors are “motivated by profits” and “they place patients at risk for therapies which have minimal effect.”
Eight months after travelling to China, Haas was struggling with the symptoms of Machado-Joseph disease. He was having problems walking and was falling again. The family still had some money left over from their fundraisers, so they decided to make another trip to China, and took out a small loan. In March 2008, he and his wife went to China, this time to Qingdao in eastern China—the first hospital wouldn’t accept them since it was now prioritizing Chinese nationals over foreigners, explains Cherie. After four weeks of treatment, Haas had more energy and there were slight improvements in his balance and speech, he says. However, the gains lasted all of two months and today he’s just as bad as before the first trip. Nevertheless, despite the costs, and the dubious rates of success, the family would like to return again if they could afford it. “I would go tomorrow if we could,” Cherie says. “It gave people hope.”
China is not normally considered a world leader in surgical advances, but according to a number of its doctors (and the Canadian patients they’ve treated), it has leapfrogged ahead in stem cell treatments. A growing number of people are travelling to China for a $30,000 experimental treatment: stem cell injections. Most, like New Brunswicker Jean Christophe Haas, 40, decide to go because they have a debilitating illness and there isn’t much that Western medicine can do for them.
Haas has Machado-Joseph disease (MJD), a terminal neuromuscular disease that affects the body in a similar way to Parkinson’s, paralyzing it gradually. Although he was diagnosed 20 years ago, it took some years for the symptoms to become noticeable. At first, only his sense of balance and his coordination were affected. Then his speech began to suffer and he started slurring his words. In 2004, he had to stop work as an army mechanic because his motor skills were no longer up to par and, in the past couple of years, he started seeing double. His family felt an overwhelming sense of panic, especially because Haas’s mother had the same disease, and his grandmother died of it. His desperation was compounded by the sense that Canadian doctors had given up on him completely; one told him there was nothing to do but to accept his fate of an early death, says his wife, Cherie Haas. “It’s awful for a young man with a family to go in and hear that. It’s heartbreaking.”
Ms. Haas searched the Web and found stories of other MJD patients who seemed to have been helped by stem cell therapy at various Chinese hospitals. Many of these good news stories are posted on personal blogs or on the websites of the clinics offering the treatments. There are thousands of these testimonials, suggesting that hundreds of people go every year, says Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta, who has published studies on this issue.
Advertising on the Internet, these Chinese medical centres promise to treat a surprisingly extensive range of diseases and conditions, including ALS, autism, brain injuries, cerebral palsy, epilepsy, multiple sclerosis, Parkinson’s, spinal muscular atrophy, septo-optic dysplasia (which can cause seeing difficulties, blindness and mental retardation), spinal cord injuries and stroke. Foreigners are a major source of funds for the clinics. Some doctors like Dr. Huang Hongyun, a neuroscientist at Beijing Xishan Hospital, have treated many patients from outside China, including some from Canada, and he has published a number of papers in Chinese medical journals tracking patients pre- and post-procedure. And yet some North American doctors are critical of how the data was compiled, and skeptical of the treatments on offer.
Once Jean Haas decided to go, he told his plans to Guy Rouleau, a neurologist at Centre Hospitalier de l’Université de Montréal, who said there were slight risks of complications, and that it would probably be a waste of money. But otherwise he didn’t try to dissuade him. Raising the money for the trip was easier than expected: much of the town of Oromocto, N.B., pitched in to raise the $30,000, with neighbours’ kids shovelling driveways to help out, and the military and community organizations hosting breakfasts and fundraisers. In April 2007, he and his wife travelled to Shenzhen, China, and stayed a little more than a month. During that time, Haas had six injections of stem cells into his spine, and an intense program of physiotherapy, exercise, massage and acupuncture. The results were immediate, he says—his balance improved just a few hours after the first procedure. Back in Canada, his neurologist confirmed that Haas had indeed gotten better: he had about 10 to 15 per cent more movement, according to Rouleau, who examined him before and after the trip. It’s difficult to speculate why this occurred, but Rouleau believes the intense physiotherapy was the primary cause.
When the couple returned from China, they wrote about their experience on the Web. Word got around, and soon hundreds of people were calling them, Cherie says. A couple whose husband had a similar neurodegenerative disease even drove from Quebec to see them, and the man subsequently decided to make the stem cell trip. Another couple flew in from Taber, Alta., and decided to go to China after seeing the home videos of Haas’s progress. Those gains were partly due to the attitude of Chinese doctors, Cherie believes. They would tell Haas to push himself to his limit and even try to “retrain his brain,” she explains. “We saw miracles while we were over there. We put the word out because I know this works.”
Even if patients experience gains, it’s important to determine whether they are from the treatment, the exercise program or a more positive frame of mind. Any advances could be merely the placebo effect, as people often feel better after being treated, even if the procedure hasn’t worked and the gains won’t last, explains John Steeves, a professor at the college for interdisciplinary studies at the University of British Columbia who specializes in spinal cord injuries. Finding out whether any treatment really works requires clinical trials, and although Dr. Huang has published the results of his trials in Chinese medical journals, this data does not conform to international standards of medical analysis. Indeed, Steeves believes Huang deliberately flouts these standards to help his bottom line. “Dr. Huang has no interest doing a valid clinical trial because if it doesn’t give him good results, his income would dry up immediately,” he says from his Vancouver office.
Patients, like Haas, who seem to have been helped by stem cell treatments, are often eager to share their stories. They may become advocates for the Chinese medical centres; Haas’s story is publicized on the website of the company that organized his medical tourism trip. By contrast, it’s more difficult to find people who haven’t gotten better, or are worse after spending $30,000 on an experimental procedure. This might be because they feel duped, or because the Chinese stem cell treatment emphasizes empowerment—a “you can do it attitude.” Those who can’t “do it,” who go through the rigorous training program and end up no better off, may feel unlucky, cheated, or they may take the lack of success personally and feel that they have somehow failed.
Missouri resident Jeff Carneal, 38, doesn’t feel like a failure, but having spent so much money, he is frustrated and disappointed. He lost the use of his legs when he fell off a stepladder while fixing his father’s barn. He has spent the past six years working with different doctors trying to learn to walk again, even flying to Quito, Ecuador, for an experimental operation (nerves were removed from his legs and grafted onto his spinal cord, which cost a lot, but didn’t really help). When a Maclean’s reporter first met Carneal at the Beijing Xishan Hospital after stem cell treatment, he was enthusiastic and believed the operation he’d had a couple of weeks earlier had alleviated some of the shearing leg pain he’d felt ever since his accident. But when contacted a few weeks after he returned to the United States, he was more downbeat, and said the operation hadn’t really made any difference.
Negative outcomes aren’t widely reported, but they are more common than the Chinese hospitals would have you think, says James Guest, a professor of neurological surgery at the University of Miami. He visited Huang in Beijing in the summer of 2004 to sample and test the fluid being injected into foreign patients. The results were inconclusive, he says. Following this, he went a step further, and examined spinal cord injury patients pre- and post-treatment in China. The results, published in 2006 in the journal Neurorehabilitation and Neural Repair, make clear the difference between what the doctors see and what patients want to believe. Of the seven, six thought they recovered some limb movement, although in most cases the physicians measured very little difference.
A few had concrete gains: a 19-year-old had chronic, burning back pain that eased enough for the patient to stop taking painkillers. Another patient had fewer muscle spasms after the procedure and could angle his left hand a little more, although he phoned Guest six months later to say the surgery had not made any permanent difference. On the downside, there were also post-treatment complications: a 22-year-old contracted meningitis, pneumonia and gastrointestinal bleeding, which were managed with heavy medications, and another had a fever and confusion along with a drug rash. Guest is critical of the Chinese stem cell treatments: he believes some doctors are “motivated by profits” and “they place patients at risk for therapies which have minimal effect.”
Eight months after travelling to China, Haas was struggling with the symptoms of Machado-Joseph disease. He was having problems walking and was falling again. The family still had some money left over from their fundraisers, so they decided to make another trip to China, and took out a small loan. In March 2008, he and his wife went to China, this time to Qingdao in eastern China—the first hospital wouldn’t accept them since it was now prioritizing Chinese nationals over foreigners, explains Cherie. After four weeks of treatment, Haas had more energy and there were slight improvements in his balance and speech, he says. However, the gains lasted all of two months and today he’s just as bad as before the first trip. Nevertheless, despite the costs, and the dubious rates of success, the family would like to return again if they could afford it. “I would go tomorrow if we could,” Cherie says. “It gave people hope.”
27 February 2009
Cameron: 'If we can't look after him, we have failed'
The Times
February 26, 2009
In an extract from their book, David Cameron's biographers explain the impact of Ivan
Francis Elliott and James Hanning
Ivan Cameron was born in Queen Charlotte's Hospital in London on Monday, April 8, 2002. The birth was by a Caesarean section, made necessary at the last minute because Ivan was the wrong way round in the womb. Otherwise it was a normal delivery of an apparently healthy baby boy. It was a joyful event but even then a period of mixed emotions: in nearby Hammersmith Hospital at the same time, David Cameron's godfather Tim Rathbone, Ian Cameron's schoolfriend and a significant personal and political inspiration, was having tests for cancer. He visited Samantha in hospital but was to die some weeks later. “The fact that he was dying while my son was being born seemed to have some kind of symbolism. It made his birth all the more poignant and moving,” Cameron later told a friend.
Although Ivan was their first child, they quickly sensed that something was wrong. At Queen Charlotte's he seemed to have occasional spasms. Otherwise he seemed a very sleepy child and Samantha struggled with breast-feeding. But the health visitor paying the routine postnatal call to Ginge Manor, where mother and baby had gone after leaving Queen Charlotte's, saw no reason to be alarmed.
Within a week of his birth it was clear that Ivan, still very sleepy, was losing weight. Sometimes his hand would spring open in a series of small but repetitive impulses. As first-time parents, David and Samantha Cameron had nothing to compare their son's behaviour to and, reassured by the advice of the health visitor, showed off their son to Dominic and Tif Loehnis that weekend.
But, as Ivan entered his second week, the jerks were becoming more pronounced. Annabel Astor had become sufficiently concerned to drive her daughter - on her birthday - and grandson to the local GP.
The doctor's initial diagnosis was that the newborn was suffering from a kidney malfunction. He directed them to the accident and emergency department of the John Radcliffe Hospital in Oxford. It was here that the baby had his first major seizure in front of a doctor.
The nature of Ivan's condition was beginning to be shockingly apparent.
David Cameron, joining his wife at the hospital, shared her distress as their tiny child was subjected to 48 hours of blood tests, brain scans and lumbar punctures. Of all the tests, the one that was picking up the most identifiable evidence of Ivan's problem was the electroencephalogram (EEG). The EEG records brainwave patterns from electrical signals emitted by the brain. This showed the high-voltage “spikes” that occur in epilepsy, but they were followed by very little activity.
After one last confirming EEG, Mike Pike, a paediatrician, took the couple into a side room to talk. With ominous purposefulness, he placed a box of Kleenex beside them. He told them that this was very serious, that the pattern he had seen was consistent with “a very poor outcome and severe disability”. Ivan, he said, would have “very serious difficulties”. Cameron, struggling to take the gravity of the diagnosis on board, said: “When you say he's got serious difficulties, does that mean he's going to have trouble doing his maths, or does that mean he's never going to be able to walk and talk?” Pike said simply: “I'm afraid it means he probably won't walk or talk.” Within a few days they had a name for Ivan's condition: Ohtahara syndrome.
The National Institute of Neurological Disorders and Stroke (NINDS) provides the following definition: “a neurological disorder characterised by seizures ... most commonly caused by metabolic disorders or structural damage in the brain, although the cause or causes in many cases can't be determined”. Most infants “show significant underdevelopment of part or all of the cerebral hemispheres. The course of Ohtahara syndrome is severely progressive. Seizures become more frequent, accompanied by physical and mental retardation. Some children will die in infancy; others will survive but be profoundly handicapped.” Unsure whether Ivan would live for weeks or years, Cameron ensured that his son was christened at the earliest opportunity.
Cameron has said that the news hit him “like a freight train”. A friend observes that the couple entered “a very, very grim and difficult period” Emotionally, they had to overcome the discrepancy between the elation they had felt at the birth of their first child and the reality of what lay ahead. “You are depressed for a while because you are grieving for the difference between your hopes and the reality,” he has said.
There were immediate practical issues to address, the most pressing of which was how best to manage his condition. Ivan went through further tests at Great Ormond Street and Queen Mary's hospitals in London as doctors experimented with cocktails of drugs. David and Samantha Cameron, taking it in turns to sleep beside their son on hospital floors, were given a brutal lesson in the reality of life as the parent of a disabled child. After his initial shock Cameron has described how he began to surface. “There was a moment driving home from hospital and just thinking ‘We are going to get through this. If we can't do a good job and look after him, then we have failed'.” Initially the Camerons tried to look after Ivan themselves, without the support of their local authority's social services department. For a year the couple struggled with the situation largely on their own, although they had help from a special-needs-trained nurse during the day. Three and a half months after Ivan was born, Samantha had returned to work - as planned - for two days a week, and after five months she was back doing nine-day fortnights. It was a difficult decision.
On the one hand she worried inconsolably about Ivan's minute-to-minute care, but, on the other, her career was important to her and she had always intended to carry on working.
Childcare was shared between them. Journalists spotted Cameron bottle-feeding his son in Westminster that summer and cited it as evidence of the changing nature of the Tory party, not knowing the fullness of that truth. The young Tory MP also took Ivan to meetings at Carlton, where he remained a consultant. Former colleagues could hardly fail to notice the difference in him. At Edwina Paine's engagement party, one said he seemed a “different man ... he seemed much less frivolous”. Another senior colleague said: “He'd walk around with that baby in a basket, he'd come to every meeting.” Where previously Cameron had appeared “arrogant”, “this was a real leveller”.
Giles Andreae has said that Ivan's handicap had given Cameron “more humility”. Cameron has admitted as much himself. “Having a severely disabled son does bring you into contact with a lot of other elements of life. You do spend a lot of time in hospitals, you meet a lot of other parents and families in the same situation. It's an eye-opener.” At one point, Ivan's blood pressure shot up and he had to be rushed to the renal unit at Great Ormond Street. Cameron found that hospital visit in particular a strange experience. “He was struck by the fact that there were all these kids there who had been on dialysis for months, being incredibly courageous with these awful, awful problems,” says a friend. “I think it made him realise that there are other people in similar situations. On one occasion he was there all night, and at about 4am he was reading Jack and Jill to someone else's kids, and then had to go to Parliament early the next day to carry on with life as normal.”
© Francis Elliott and James Hanning 2007. Extracted from Cameron: The Rise of the New Conservative (Fourth Estate, £18.99) Available from Times BooksFirst for £17.09, free p&p. 0870 1608080, timesonline.co.uk/booksfirst. The Times, on behalf of the authors and the publisher, has made a donation to Mencap and St Mary's Hospital
February 26, 2009
In an extract from their book, David Cameron's biographers explain the impact of Ivan
Francis Elliott and James Hanning
Ivan Cameron was born in Queen Charlotte's Hospital in London on Monday, April 8, 2002. The birth was by a Caesarean section, made necessary at the last minute because Ivan was the wrong way round in the womb. Otherwise it was a normal delivery of an apparently healthy baby boy. It was a joyful event but even then a period of mixed emotions: in nearby Hammersmith Hospital at the same time, David Cameron's godfather Tim Rathbone, Ian Cameron's schoolfriend and a significant personal and political inspiration, was having tests for cancer. He visited Samantha in hospital but was to die some weeks later. “The fact that he was dying while my son was being born seemed to have some kind of symbolism. It made his birth all the more poignant and moving,” Cameron later told a friend.
Although Ivan was their first child, they quickly sensed that something was wrong. At Queen Charlotte's he seemed to have occasional spasms. Otherwise he seemed a very sleepy child and Samantha struggled with breast-feeding. But the health visitor paying the routine postnatal call to Ginge Manor, where mother and baby had gone after leaving Queen Charlotte's, saw no reason to be alarmed.
Within a week of his birth it was clear that Ivan, still very sleepy, was losing weight. Sometimes his hand would spring open in a series of small but repetitive impulses. As first-time parents, David and Samantha Cameron had nothing to compare their son's behaviour to and, reassured by the advice of the health visitor, showed off their son to Dominic and Tif Loehnis that weekend.
But, as Ivan entered his second week, the jerks were becoming more pronounced. Annabel Astor had become sufficiently concerned to drive her daughter - on her birthday - and grandson to the local GP.
The doctor's initial diagnosis was that the newborn was suffering from a kidney malfunction. He directed them to the accident and emergency department of the John Radcliffe Hospital in Oxford. It was here that the baby had his first major seizure in front of a doctor.
The nature of Ivan's condition was beginning to be shockingly apparent.
David Cameron, joining his wife at the hospital, shared her distress as their tiny child was subjected to 48 hours of blood tests, brain scans and lumbar punctures. Of all the tests, the one that was picking up the most identifiable evidence of Ivan's problem was the electroencephalogram (EEG). The EEG records brainwave patterns from electrical signals emitted by the brain. This showed the high-voltage “spikes” that occur in epilepsy, but they were followed by very little activity.
After one last confirming EEG, Mike Pike, a paediatrician, took the couple into a side room to talk. With ominous purposefulness, he placed a box of Kleenex beside them. He told them that this was very serious, that the pattern he had seen was consistent with “a very poor outcome and severe disability”. Ivan, he said, would have “very serious difficulties”. Cameron, struggling to take the gravity of the diagnosis on board, said: “When you say he's got serious difficulties, does that mean he's going to have trouble doing his maths, or does that mean he's never going to be able to walk and talk?” Pike said simply: “I'm afraid it means he probably won't walk or talk.” Within a few days they had a name for Ivan's condition: Ohtahara syndrome.
The National Institute of Neurological Disorders and Stroke (NINDS) provides the following definition: “a neurological disorder characterised by seizures ... most commonly caused by metabolic disorders or structural damage in the brain, although the cause or causes in many cases can't be determined”. Most infants “show significant underdevelopment of part or all of the cerebral hemispheres. The course of Ohtahara syndrome is severely progressive. Seizures become more frequent, accompanied by physical and mental retardation. Some children will die in infancy; others will survive but be profoundly handicapped.” Unsure whether Ivan would live for weeks or years, Cameron ensured that his son was christened at the earliest opportunity.
Cameron has said that the news hit him “like a freight train”. A friend observes that the couple entered “a very, very grim and difficult period” Emotionally, they had to overcome the discrepancy between the elation they had felt at the birth of their first child and the reality of what lay ahead. “You are depressed for a while because you are grieving for the difference between your hopes and the reality,” he has said.
There were immediate practical issues to address, the most pressing of which was how best to manage his condition. Ivan went through further tests at Great Ormond Street and Queen Mary's hospitals in London as doctors experimented with cocktails of drugs. David and Samantha Cameron, taking it in turns to sleep beside their son on hospital floors, were given a brutal lesson in the reality of life as the parent of a disabled child. After his initial shock Cameron has described how he began to surface. “There was a moment driving home from hospital and just thinking ‘We are going to get through this. If we can't do a good job and look after him, then we have failed'.” Initially the Camerons tried to look after Ivan themselves, without the support of their local authority's social services department. For a year the couple struggled with the situation largely on their own, although they had help from a special-needs-trained nurse during the day. Three and a half months after Ivan was born, Samantha had returned to work - as planned - for two days a week, and after five months she was back doing nine-day fortnights. It was a difficult decision.
On the one hand she worried inconsolably about Ivan's minute-to-minute care, but, on the other, her career was important to her and she had always intended to carry on working.
Childcare was shared between them. Journalists spotted Cameron bottle-feeding his son in Westminster that summer and cited it as evidence of the changing nature of the Tory party, not knowing the fullness of that truth. The young Tory MP also took Ivan to meetings at Carlton, where he remained a consultant. Former colleagues could hardly fail to notice the difference in him. At Edwina Paine's engagement party, one said he seemed a “different man ... he seemed much less frivolous”. Another senior colleague said: “He'd walk around with that baby in a basket, he'd come to every meeting.” Where previously Cameron had appeared “arrogant”, “this was a real leveller”.
Giles Andreae has said that Ivan's handicap had given Cameron “more humility”. Cameron has admitted as much himself. “Having a severely disabled son does bring you into contact with a lot of other elements of life. You do spend a lot of time in hospitals, you meet a lot of other parents and families in the same situation. It's an eye-opener.” At one point, Ivan's blood pressure shot up and he had to be rushed to the renal unit at Great Ormond Street. Cameron found that hospital visit in particular a strange experience. “He was struck by the fact that there were all these kids there who had been on dialysis for months, being incredibly courageous with these awful, awful problems,” says a friend. “I think it made him realise that there are other people in similar situations. On one occasion he was there all night, and at about 4am he was reading Jack and Jill to someone else's kids, and then had to go to Parliament early the next day to carry on with life as normal.”
© Francis Elliott and James Hanning 2007. Extracted from Cameron: The Rise of the New Conservative (Fourth Estate, £18.99) Available from Times BooksFirst for £17.09, free p&p. 0870 1608080, timesonline.co.uk/booksfirst. The Times, on behalf of the authors and the publisher, has made a donation to Mencap and St Mary's Hospital
Hospices where Ivan's legacy lives on
- Health News, Health & Wellbeing - The Independent
The Camerons make appeal for carers and charities that helped their eldest child
By Amol Rajan
Hours after their six-year-old son Ivan died on Wednesday morning, David and Samantha Cameron asked well-wishers not to send them flowers. Instead, the couple said, donations should be sent to one of the many institutions which had helped Ivan, who suffered from a combination of severe epilepsy and cerebral palsy known as Ohtahara syndrome, throughout his brief and difficult life.
If it were possible for good to emerge from the death of their eldest child, the Camerons felt, it would be that these care centres, which have been pillars of hope in the lives of thousands of parents, received the recognition they deserve.
Among them are two hospices linked by an unlikely meeting 14 years ago. Sister Frances Dominica, the British nurse who in 1982 opened the world's first children's hospice, Helen House, in Oxfordshire, was invited for coffee by Kathryn Turner, a 55-year-old administrator working at the React children's charity.
Inspired by Helen House, and galvanised by her meeting with Sister Frances, Ms Turner set about trying to create a similar institution in Hampton, Middlesex. It took her 10 years to raise the funds – £3m – with donations ranging from 10p to £100,000.
Eventually, in 2005, the Shooting Star Children's Hospice was founded. At the time it was one of only eight such hospices in the world; today, it is an international standard-bearer. The Camerons, who spend weekends in the Tory leader's constituency of Witney, in Oxfordshire, used Helen House extensively when away from London. But during the week, they relied even more heavily on the outreach services – meaning nursing visits to the family home in Kensington – provided by Shooting Star.
Open 365 days a year, the hospice offers several types of service, entirely free of charge, to parents of children with disabilities. Aside from outreach staff and day care, it provides "end of life care" to support parents in the final stages of children's lives.
As well as family rooms, children's bedrooms and therapy rooms designed to provide relaxation, Shooting Star has an arts and crafts room, a sensory room with soft furnishings and music, outdoor play areas and a peaceful garden for grieving parents. Its hydrotherapy pool and spa is hugely popular because it gives children freedom they otherwise don't have.
"David and Samantha would have outreach nurses visit them quite regularly," said Dalton Leong, a former Barclay's banker who now works full-time as chief executive at Shooting Star. He added: "They also came to us regularly on our short break scheme, where they would drop Ivan and his brother and sister off with us while they recharge their batteries. Sometimes this would be for a few hours; at other times it would be for a few days."
Mr Cameron has said repeatedly that his political outlook has been conditioned hugely by his experience of hospices, which he as Prime Minister would seek to give greater prominence. With growing demand – the paucity of such facilities means they are hugely over-subscribed – comes growing needs too. The centre, which receives only 8 per cent of its funding from the Department of Health, costs £8,000 per day to run. Its annual fundraising target rose last year, from £2.5m to £3m. With a third of its funding coming from local community donations, Britain's recession is going to make hitting that target difficult this year.
Campaigning from some well-known patrons has helped. These include Sir Cliff Richard, Sir Trevor McDonald, Joan Collins, Richard E Grant, Vince Cable and Laurence Llewelyn-Bowen, the last of whom donated £500,000 he earned from a Valentine's Day edition of Who Wants To Be A Millionaire? But few people realise the fragility of these centres' finances, the Spandau Ballet singer Tony Hadley told The Independent yesterday. Hadley has played in several fundraising concerts free of charge for the hospice.
"I was so upset by what happened to Ivan, so upset, as was my wife and everyone we know," he said. "Before I got involved with Shooting Star, I had no idea they received hardly any help from the Government. These places are so fundamental to their communities, and so much good comes of them, that it's just pure scandalous that they struggle for cash. Nothing will bring Ivan back, but if Shooting Star can keep going that will be a wonderful legacy for him to leave."
Wellwishers should sent donations to Mencap, the Friends of St Mary's Hospital or one of three other charities – the Friends of Jack Tizard School; Helen and Douglas House, in Twickenham, and the Shooting Stars House, in Hampton, Middlesex.
The Camerons make appeal for carers and charities that helped their eldest child
By Amol Rajan
Hours after their six-year-old son Ivan died on Wednesday morning, David and Samantha Cameron asked well-wishers not to send them flowers. Instead, the couple said, donations should be sent to one of the many institutions which had helped Ivan, who suffered from a combination of severe epilepsy and cerebral palsy known as Ohtahara syndrome, throughout his brief and difficult life.
If it were possible for good to emerge from the death of their eldest child, the Camerons felt, it would be that these care centres, which have been pillars of hope in the lives of thousands of parents, received the recognition they deserve.
Among them are two hospices linked by an unlikely meeting 14 years ago. Sister Frances Dominica, the British nurse who in 1982 opened the world's first children's hospice, Helen House, in Oxfordshire, was invited for coffee by Kathryn Turner, a 55-year-old administrator working at the React children's charity.
Inspired by Helen House, and galvanised by her meeting with Sister Frances, Ms Turner set about trying to create a similar institution in Hampton, Middlesex. It took her 10 years to raise the funds – £3m – with donations ranging from 10p to £100,000.
Eventually, in 2005, the Shooting Star Children's Hospice was founded. At the time it was one of only eight such hospices in the world; today, it is an international standard-bearer. The Camerons, who spend weekends in the Tory leader's constituency of Witney, in Oxfordshire, used Helen House extensively when away from London. But during the week, they relied even more heavily on the outreach services – meaning nursing visits to the family home in Kensington – provided by Shooting Star.
Open 365 days a year, the hospice offers several types of service, entirely free of charge, to parents of children with disabilities. Aside from outreach staff and day care, it provides "end of life care" to support parents in the final stages of children's lives.
As well as family rooms, children's bedrooms and therapy rooms designed to provide relaxation, Shooting Star has an arts and crafts room, a sensory room with soft furnishings and music, outdoor play areas and a peaceful garden for grieving parents. Its hydrotherapy pool and spa is hugely popular because it gives children freedom they otherwise don't have.
"David and Samantha would have outreach nurses visit them quite regularly," said Dalton Leong, a former Barclay's banker who now works full-time as chief executive at Shooting Star. He added: "They also came to us regularly on our short break scheme, where they would drop Ivan and his brother and sister off with us while they recharge their batteries. Sometimes this would be for a few hours; at other times it would be for a few days."
Mr Cameron has said repeatedly that his political outlook has been conditioned hugely by his experience of hospices, which he as Prime Minister would seek to give greater prominence. With growing demand – the paucity of such facilities means they are hugely over-subscribed – comes growing needs too. The centre, which receives only 8 per cent of its funding from the Department of Health, costs £8,000 per day to run. Its annual fundraising target rose last year, from £2.5m to £3m. With a third of its funding coming from local community donations, Britain's recession is going to make hitting that target difficult this year.
Campaigning from some well-known patrons has helped. These include Sir Cliff Richard, Sir Trevor McDonald, Joan Collins, Richard E Grant, Vince Cable and Laurence Llewelyn-Bowen, the last of whom donated £500,000 he earned from a Valentine's Day edition of Who Wants To Be A Millionaire? But few people realise the fragility of these centres' finances, the Spandau Ballet singer Tony Hadley told The Independent yesterday. Hadley has played in several fundraising concerts free of charge for the hospice.
"I was so upset by what happened to Ivan, so upset, as was my wife and everyone we know," he said. "Before I got involved with Shooting Star, I had no idea they received hardly any help from the Government. These places are so fundamental to their communities, and so much good comes of them, that it's just pure scandalous that they struggle for cash. Nothing will bring Ivan back, but if Shooting Star can keep going that will be a wonderful legacy for him to leave."
Wellwishers should sent donations to Mencap, the Friends of St Mary's Hospital or one of three other charities – the Friends of Jack Tizard School; Helen and Douglas House, in Twickenham, and the Shooting Stars House, in Hampton, Middlesex.
25 February 2009
Cameron's Son Dies
Tragedy of disabled Ivan, six
TORY leader David Cameron’s disabled son Ivan has died, it was announced today.
FAMILY MAN: David Cameron with wife Samantha, disabled son Ivan, daughter Nancy and little Arthur on a walk near his Oxfordshire home in 2007. Ivan died early today
A Conservative Party spokesman said: ‘‘It is with great sadness that David and Samantha Cameron must confirm the death of their six-year-old son Ivan.
‘‘Ivan, who suffered from cerebral palsy and severe epilepsy, was taken ill overnight and died at St Mary’s Hospital, Paddington, early this morning.
‘‘David and Samantha would ask that their privacy is respected at this terribly difficult time.’’
Ivan was the Camerons’ first child, born at Queen Charlotte’s Hospital in London on April 8, 2002. He suffered his first seizure within weeks and was in and out of hospitals all of his life.
On learning of his son’s illness, Mr Cameron has said in the past: ‘‘It hits you like a freight train because all the expectations you have for your child change immediately.’’
They have two other children, Nancy, five, and Arthur, three.
Prime Minister Gordon Brown led condolences today - saying the loss of a child was something “no parent should have to bear”.
Mr Brown, whose own baby daughter died in 2002, said: “Sarah and I were very saddened to hear of the death of Ivan and we have sent our condolences to David and Samantha. I know Ivan was a child who brought joy to all those who knew him and his was a life surrounded by love. The thoughts and prayers of the whole country are with David, Samantha and their family.”
Today’s Prime Minister’s Questions in the Commons has been suspended, Downing Street said.
TORY leader David Cameron’s disabled son Ivan has died, it was announced today.
FAMILY MAN: David Cameron with wife Samantha, disabled son Ivan, daughter Nancy and little Arthur on a walk near his Oxfordshire home in 2007. Ivan died early today
A Conservative Party spokesman said: ‘‘It is with great sadness that David and Samantha Cameron must confirm the death of their six-year-old son Ivan.
‘‘Ivan, who suffered from cerebral palsy and severe epilepsy, was taken ill overnight and died at St Mary’s Hospital, Paddington, early this morning.
‘‘David and Samantha would ask that their privacy is respected at this terribly difficult time.’’
Ivan was the Camerons’ first child, born at Queen Charlotte’s Hospital in London on April 8, 2002. He suffered his first seizure within weeks and was in and out of hospitals all of his life.
On learning of his son’s illness, Mr Cameron has said in the past: ‘‘It hits you like a freight train because all the expectations you have for your child change immediately.’’
They have two other children, Nancy, five, and Arthur, three.
Prime Minister Gordon Brown led condolences today - saying the loss of a child was something “no parent should have to bear”.
Mr Brown, whose own baby daughter died in 2002, said: “Sarah and I were very saddened to hear of the death of Ivan and we have sent our condolences to David and Samantha. I know Ivan was a child who brought joy to all those who knew him and his was a life surrounded by love. The thoughts and prayers of the whole country are with David, Samantha and their family.”
Today’s Prime Minister’s Questions in the Commons has been suspended, Downing Street said.
15 February 2009
New to blogging
I'm Shelley :I have to say, I'm very new to this blogging thing and right now, I'm feeling a little lost and confused....lol... (Please bear with me.) I join this site because my son Josh. Josh is 9 yrs Old and has a many issues going on. Born with a mild form of CP and Epilepsy. We later learned that Josh also has a mild form of Autism.
Each day we learn something new and take each day one step at a time. We have concord some challenges and yet we still have a long way to go. I'm interested in learning all I can about Autism.
Thanks for taking the time to read this and I look forward to meeting every one here.
Each day we learn something new and take each day one step at a time. We have concord some challenges and yet we still have a long way to go. I'm interested in learning all I can about Autism.
Thanks for taking the time to read this and I look forward to meeting every one here.
08 February 2009
New technologic device helps control seizures
Epilepsy patients in a clinical trial who received an experimental brain treatment from Fridley-based Medtronic saw a significant reduction in seizures — a result released Saturday night that will spur the company to seek Food and Drug Administration approval so it can sell the device.
The trial was the most rigorous study thus far of Medtronic's deep brain stimulation device for epilepsy. The results were presented at the annual meeting of the American Epilepsy Society in Seattle.
They mark a significant milestone in Medtronic's drive to further develop the market for brain stimulators, which already are approved for use in patients with tremor disorders such as Parkinson's disease.
Much like pacemakers use electrical energy to regulate heart rhythms, implantable stimulators like the epilepsy device target specific portions of the brain.
"While the exact mechanism of why this works is not known, it has something to do with disrupting the highly synchronized abnormal electrical activity in the brain during a seizure," said Robert Fisher, professor of neurology and director of the Stanford Epilepsy Center, who was principal investigator of the trial.
The device consists of a pulse generator that is implanted in the chest and connected to small electrical wires that are tunneled beneath the skin and up the neck to the top of the head. The wires pass through the skull and reach deep into the brain, where they deliver electrical stimulation.
Brain stimulators are part of a group of so-called neuromodulation devices that Medtronic and rivals Boston Scientific and Little Canada-based St. Jude Medical see as key to future growth.
Houston-based Cyberonics already has approval from the FDA to sell a neuromodulation device for epilepsy patients, although that product sends electrical pulses to the vagus nerve in the neck — not the brain.
Epilepsy is a neurological condition that produces seizures affecting a variety of mental and physical functions. Seizures occur when a brief, strong surge of electrical activity affects part or all of the brain.
Patients enrolled in the study have had epilepsy for an average of 22 years, and their cases have been so severe that epilepsy medications haven't helped much.
The study found that 53 patients using the device in conjunction with epilepsy medications saw a median reduction in seizure frequency of 38 percent at three months — significantly better than the result for a control group of 55 patients who received the device but weren't receiving stimulation.
After three months, patients in the control group also had their devices turned on, and more patients saw a higher level of improvement, Fisher said. One of the key findings, he said, is that 60 percent of study participants for whom researchers had long-term data reported a 50 percent or greater reduction in their baseline rate of seizures at the end of the study period — anywhere from one to four years.
"If it hadn't been sustained, I wouldn't be so interested," Fisher said, adding that patients likely wouldn't let doctors put "wires in their heads" for a treatment that stopped working within six months. "But it turned out to be lasting."
Although Fisher said the results were "promising," he stressed that the device doesn't provide a cure for epilepsy. While a few patients in the study were seizure-free for long periods, a few saw no benefit, he said.
Others saw some level of reduction in seizures and, in some cases, a reduction in the intensity of seizures.
About 11 percent of study participants suffered an infection — not in the brain, but in the chest, neck or scalp where the pulse generator and wires were implanted.
Even if all goes well with Medtronic's forthcoming application for FDA approval, Fisher added, the treatment likely wouldn't be available until mid- to late 2010.
The trial was the most rigorous study thus far of Medtronic's deep brain stimulation device for epilepsy. The results were presented at the annual meeting of the American Epilepsy Society in Seattle.
They mark a significant milestone in Medtronic's drive to further develop the market for brain stimulators, which already are approved for use in patients with tremor disorders such as Parkinson's disease.
Much like pacemakers use electrical energy to regulate heart rhythms, implantable stimulators like the epilepsy device target specific portions of the brain.
"While the exact mechanism of why this works is not known, it has something to do with disrupting the highly synchronized abnormal electrical activity in the brain during a seizure," said Robert Fisher, professor of neurology and director of the Stanford Epilepsy Center, who was principal investigator of the trial.
The device consists of a pulse generator that is implanted in the chest and connected to small electrical wires that are tunneled beneath the skin and up the neck to the top of the head. The wires pass through the skull and reach deep into the brain, where they deliver electrical stimulation.
Brain stimulators are part of a group of so-called neuromodulation devices that Medtronic and rivals Boston Scientific and Little Canada-based St. Jude Medical see as key to future growth.
Houston-based Cyberonics already has approval from the FDA to sell a neuromodulation device for epilepsy patients, although that product sends electrical pulses to the vagus nerve in the neck — not the brain.
Epilepsy is a neurological condition that produces seizures affecting a variety of mental and physical functions. Seizures occur when a brief, strong surge of electrical activity affects part or all of the brain.
Patients enrolled in the study have had epilepsy for an average of 22 years, and their cases have been so severe that epilepsy medications haven't helped much.
The study found that 53 patients using the device in conjunction with epilepsy medications saw a median reduction in seizure frequency of 38 percent at three months — significantly better than the result for a control group of 55 patients who received the device but weren't receiving stimulation.
After three months, patients in the control group also had their devices turned on, and more patients saw a higher level of improvement, Fisher said. One of the key findings, he said, is that 60 percent of study participants for whom researchers had long-term data reported a 50 percent or greater reduction in their baseline rate of seizures at the end of the study period — anywhere from one to four years.
"If it hadn't been sustained, I wouldn't be so interested," Fisher said, adding that patients likely wouldn't let doctors put "wires in their heads" for a treatment that stopped working within six months. "But it turned out to be lasting."
Although Fisher said the results were "promising," he stressed that the device doesn't provide a cure for epilepsy. While a few patients in the study were seizure-free for long periods, a few saw no benefit, he said.
Others saw some level of reduction in seizures and, in some cases, a reduction in the intensity of seizures.
About 11 percent of study participants suffered an infection — not in the brain, but in the chest, neck or scalp where the pulse generator and wires were implanted.
Even if all goes well with Medtronic's forthcoming application for FDA approval, Fisher added, the treatment likely wouldn't be available until mid- to late 2010.
Brain Surgery for Epilepsy Extends Life Expectancy, Study Says
Dec. 2 (Bloomberg) -- A surgery to remove a paper clip-sized sliver of brain may help some epilepsy patients live as much as five years longer than those on anti-seizure drugs, according to a computer-generated analysis of patient data and studies.
The surgery can also boost quality of life, allowing patients with temporal lobe epilepsy, the most common form of the disorder, to live more years with fewer seizures, the analysis found. The report will be published in tomorrow’s Journal of the American Medical Association.
Doctors have known the surgery to be effective since the 1950s in patients whose seizures stem from the temporal lobe, the part of the brain that processes emotions. Still, many patients that might benefit don’t get the surgery because doctors overestimate the likelihood of complications, the study’s authors said. The surgery is most effective when performed early enough to prevent permanent disabilities, said neurologist Jerome Engel, the author of an accompanying editorial.
“The objective for treatment should be no seizures and no side effects, and as soon as possible,” said Engel, a professor of neurology at the University of California, Los Angeles, in a telephone interview today. He was not involved in the study. “The longer the seizures go on, the less likely patients are to be rehabilitated.”
The report was created by using quality-of-life data obtained directly from patients and published data from medical studies to create a model. The researchers ran the model 10,000 times to get their results. The model patient used in the report was 35 years old.
Signals Disrupted
Epilepsy is an illness in which signals of the brain’s nerve cells’ are disrupted, causing seizures. The condition is incurable, and the risk of seizures means some people can’t get drivers’ licenses in certain states, according to the National Institutes of Health. About 3 million Americans are affected, causing $12.5 billion in annual costs, according to the Epilepsy Foundation.
About 20 percent to 40 percent of patients aren’t helped by anti-seizure medications, according to the study. Epilepsy drugs include Johnson & Johnson’s Topamax, Abbott Laboratories’ Depakote and Novartis AG’s Tegretol.
“The rule of thumb we use is when patients fail two medications at optimal doses, doctors should consider referring patients,” for the surgery, said Hyunmi Choi, an assistant professor of neurology at the Columbia University Medical Center and the study’s lead author.
To perform the surgery, doctors first confirm that the anterior part of the temporal lobe is causing the seizures, said Choi. If that’s where the seizure begins, doctors remove 2 to 3 centimeters of tissue.
Surgical Side Effects
Side effects of the surgery, which may be performed on children and adults, include complications from anesthesia, some sensory changes, partial loss of vision or speech, or infection, according to the Epilepsy Foundation, an advocacy group.
“The likelihood of patients noticing any cognitive changes are small,” Choi said in a telephone interview today. “Because seizures arise from that part of the brain, it’s dysfunctional already.”
The surgery can also boost quality of life, allowing patients with temporal lobe epilepsy, the most common form of the disorder, to live more years with fewer seizures, the analysis found. The report will be published in tomorrow’s Journal of the American Medical Association.
Doctors have known the surgery to be effective since the 1950s in patients whose seizures stem from the temporal lobe, the part of the brain that processes emotions. Still, many patients that might benefit don’t get the surgery because doctors overestimate the likelihood of complications, the study’s authors said. The surgery is most effective when performed early enough to prevent permanent disabilities, said neurologist Jerome Engel, the author of an accompanying editorial.
“The objective for treatment should be no seizures and no side effects, and as soon as possible,” said Engel, a professor of neurology at the University of California, Los Angeles, in a telephone interview today. He was not involved in the study. “The longer the seizures go on, the less likely patients are to be rehabilitated.”
The report was created by using quality-of-life data obtained directly from patients and published data from medical studies to create a model. The researchers ran the model 10,000 times to get their results. The model patient used in the report was 35 years old.
Signals Disrupted
Epilepsy is an illness in which signals of the brain’s nerve cells’ are disrupted, causing seizures. The condition is incurable, and the risk of seizures means some people can’t get drivers’ licenses in certain states, according to the National Institutes of Health. About 3 million Americans are affected, causing $12.5 billion in annual costs, according to the Epilepsy Foundation.
About 20 percent to 40 percent of patients aren’t helped by anti-seizure medications, according to the study. Epilepsy drugs include Johnson & Johnson’s Topamax, Abbott Laboratories’ Depakote and Novartis AG’s Tegretol.
“The rule of thumb we use is when patients fail two medications at optimal doses, doctors should consider referring patients,” for the surgery, said Hyunmi Choi, an assistant professor of neurology at the Columbia University Medical Center and the study’s lead author.
To perform the surgery, doctors first confirm that the anterior part of the temporal lobe is causing the seizures, said Choi. If that’s where the seizure begins, doctors remove 2 to 3 centimeters of tissue.
Surgical Side Effects
Side effects of the surgery, which may be performed on children and adults, include complications from anesthesia, some sensory changes, partial loss of vision or speech, or infection, according to the Epilepsy Foundation, an advocacy group.
“The likelihood of patients noticing any cognitive changes are small,” Choi said in a telephone interview today. “Because seizures arise from that part of the brain, it’s dysfunctional already.”
07 February 2009
Scientists shed light on causes of epilepsy
A breakdown in a reaction between immune cells and blood vessels in the brain appears to play a key role in epilepsy, Italian researchers said on Monday.
The discovery could mean that some modern antibody-based drugs designed to modify the immune system used in other diseases may one day help fight the debilitating disorder.
A study of mice showed how immune cells sticking to blood vessels in the brain caused inflammation that contributed to epileptic seizures, Gabriela Constantin of the University of Verona in Italy and colleagues reported.
The finding could lead to new treatments to prevent the condition that affects about 1 percent of the general population worldwide, said Constantin, who led the study published in the journal Nature Medicine.
"This mechanism was not previously suspected in epilepsy," she said in a telephone interview.
Epilepsy is considered incurable but medicines can control seizures in most people with the common neurological disorder, although sometimes they can have severe side effects.
Many seizures -- which are caused by excessive electrical activity in the brain -- involve loss of consciousness, with the body twitching or shaking. People who have more than one seizure are considered to have epilepsy.
The researchers found that during a seizure the brain released a chemical that caused the white blood cells, or leukocytes, to stick to blood vessels. The immune cells protect the body from threats such as bacteria, viruses, and infections.
But when these immune cells stuck to the brain blood vessels they caused damage by releasing molecules that caused inflammation and contributed to seizures in mice, Constantin said.
"We found a lot of inflammation in this process in the generation of a new seizure," she said.
Mice that received monoclonal antibodies to block the immune cells from sticking to blood vessels had a dramatic reduction of seizures, in some cases 100 percent, Constantin said.
The treatment worked in a similar way to Elan Corp Plc's (ELN.I: Quote, Profile, Research, Stock Buzz) multiple sclerosis drug Tysabri and Genentech Inc's (DNA.N: Quote, Profile, Research, Stock Buzz) Raptiva for psoriasis, she added.
This means these kinds of drugs might also one day be used to treat epilepsy and the findings could also lead to new anti-inflammatory treatments for epilepsy, she said.
"We predict other inflammatory drugs can work and be discovered for use in humans," she said. "We have preliminary data on other inflamatory mechanism."
The discovery could mean that some modern antibody-based drugs designed to modify the immune system used in other diseases may one day help fight the debilitating disorder.
A study of mice showed how immune cells sticking to blood vessels in the brain caused inflammation that contributed to epileptic seizures, Gabriela Constantin of the University of Verona in Italy and colleagues reported.
The finding could lead to new treatments to prevent the condition that affects about 1 percent of the general population worldwide, said Constantin, who led the study published in the journal Nature Medicine.
"This mechanism was not previously suspected in epilepsy," she said in a telephone interview.
Epilepsy is considered incurable but medicines can control seizures in most people with the common neurological disorder, although sometimes they can have severe side effects.
Many seizures -- which are caused by excessive electrical activity in the brain -- involve loss of consciousness, with the body twitching or shaking. People who have more than one seizure are considered to have epilepsy.
The researchers found that during a seizure the brain released a chemical that caused the white blood cells, or leukocytes, to stick to blood vessels. The immune cells protect the body from threats such as bacteria, viruses, and infections.
But when these immune cells stuck to the brain blood vessels they caused damage by releasing molecules that caused inflammation and contributed to seizures in mice, Constantin said.
"We found a lot of inflammation in this process in the generation of a new seizure," she said.
Mice that received monoclonal antibodies to block the immune cells from sticking to blood vessels had a dramatic reduction of seizures, in some cases 100 percent, Constantin said.
The treatment worked in a similar way to Elan Corp Plc's (ELN.I: Quote, Profile, Research, Stock Buzz) multiple sclerosis drug Tysabri and Genentech Inc's (DNA.N: Quote, Profile, Research, Stock Buzz) Raptiva for psoriasis, she added.
This means these kinds of drugs might also one day be used to treat epilepsy and the findings could also lead to new anti-inflammatory treatments for epilepsy, she said.
"We predict other inflammatory drugs can work and be discovered for use in humans," she said. "We have preliminary data on other inflamatory mechanism."
24 December 2008
We could not begin to repay what Claire House has done for us ... even if we had a million pounds
We could not begin to repay what Claire House has done for us ... even if we had a million pounds
EVERY mum treasures the bits of handmade Christmas crafts brought home by their children. But Hayley Smallman particularly cherishes the glittery snowmen and cardboard trees which she has displayed on a special shelf in her Aintree home.
“They are my Christmas decorations made by Holly and I’m so very proud of them. But then I am very proud of Holly.
“All my kids are special but we have been blessed to have her. She has brought so much joy to our lives and I wouldn’t change her for the world.”
Like every family the Smallmans have spent the past few weeks busily preparing for Christmas.
But Hayley accepts they wouldn’t be where they are without Claire House.
“Without them we just couldn’t function. That’s why I want to shout from the rooftops how wonderful they are.
“I could not repay what they have done for me if I had a million pounds. And the more people realise what they do and help support them, the more families like ours can be helped.”
Yet Hayley readily admits that, until a few short years ago, she hadn’t even heard of Claire House.
When Holly was born in December seven years ago Hayley and her husband Gary, a French polisher by trade, already had one son Joshua, now 10, and were thrilled with the arrival of their little girl.
But at eight weeks old Holly had a series of respiratory arrests.
“She simply stopped breathing. It was sheer panic and a totally surreal situation,” remembers Hayley, 32.
Doctors at Alder Hey hospital initially considered meningitis and, while Holly remained in intensive care, performed a series of tests on her.
It was discovered she had a rare metabolic condition and had suffered severe brain damage.
“It was as if someone had taken my life and put it in a washing machine on spin. If your child is ill you can make them better but we couldn’t do that for Holly.
“At the end of three weeks in hospital the decision was made to turn off her life support machine,” says Hayley.
“All the family came in to say goodbye and then Gary and me and Holly were taken to a small room and simply waited for her to fall asleep.”
But then a miracle happened.
“She simply turned her head, opened her eyes and looked at me. That’s when I knew we had a fighter.”
But in the coming weeks and months Hayley admits there were times when it was difficult to adjust to what life might hold for them.
“You have all these aspirations and hopes for your kids; I’d had this little girl and imagined her doing ballet lessons and us going shopping together and now we were faced with a very different scenario.”
Doctors warned her parents that she may not live beyond her second birthday.
“We decided to bring her home. If we only had a short time with her we wanted it to be as a family.”
But under her parents’ devoted care Holly has just marked her seventh birthday.
She has complex medical needs including epilepsy, cerebral palsy and chronic lung disease. She is also blind and oxygen dependant and is fed through a tube in her stomach.
Hayley admits there have been ‘dark periods’ where they have seen their daughter back on life support.
“We never know what the next day will bring. But no parent gets a handbook and this is the way life is now. Is all the hard work worth it? Yes, 110%.
“Hayley is so strong and so brave; I’m full of admiration for her.
“She can’t say ‘mum’ to me but she tells me all I need to know with her eyes. She loves water and Dora The Explorer and she adores her cuddles. When Joshua and her baby sister Ruby lie next to her Holly’s eyes simply light up; the baby takes her hand, kisses it and says ‘baba’ and she loves it.”
Hayley is frank about the difficulties faced in looking after Holly, a 24-hour-a-day regime dominated by rounds of administering medicine and feeds, hospital appointments and monitoring her well-being.
One parent also stays by her side each night to keep her comfortable.
“It is hard and as a couple it can take its toll. We can’t do a lot of things other families take for granted, either, like go swimming together.
“But we’re a strong unit and wouldn’t change things for the world. And we have the wonderful Claire House.”
Initially fearful of the word ‘hospice’ Hayley and Gary first visited Claire House some years ago.
“In my mind even the word conjured up the idea of dying but we went and it was wonderful. There’s joy in the air, not sadness.”
Now Holly attends Claire House regularly, enjoying the hospice’s sensory and arts and crafts rooms or experiencing an aromatherapy massage. She has also stayed there to allow Gary and Hayley a break and to spend time with their other children.
“We simply couldn’t cope without them. They operate a hospice to home service too which I used the other day. I had so much to do, so much shopping to get and was quite stressed by it all.
“The staff came to the house, took care of Holly and when I came home had even put some decorations up; that’s the sort of people they are.”
She is passionate that the service they offer should not be a luxury for parents like her and Gary.
“We don’t know how long we have Holly for so we try to cherish every moment. Claire House helps us do that.”
EVERY mum treasures the bits of handmade Christmas crafts brought home by their children. But Hayley Smallman particularly cherishes the glittery snowmen and cardboard trees which she has displayed on a special shelf in her Aintree home.
“They are my Christmas decorations made by Holly and I’m so very proud of them. But then I am very proud of Holly.
“All my kids are special but we have been blessed to have her. She has brought so much joy to our lives and I wouldn’t change her for the world.”
Like every family the Smallmans have spent the past few weeks busily preparing for Christmas.
But Hayley accepts they wouldn’t be where they are without Claire House.
“Without them we just couldn’t function. That’s why I want to shout from the rooftops how wonderful they are.
“I could not repay what they have done for me if I had a million pounds. And the more people realise what they do and help support them, the more families like ours can be helped.”
Yet Hayley readily admits that, until a few short years ago, she hadn’t even heard of Claire House.
When Holly was born in December seven years ago Hayley and her husband Gary, a French polisher by trade, already had one son Joshua, now 10, and were thrilled with the arrival of their little girl.
But at eight weeks old Holly had a series of respiratory arrests.
“She simply stopped breathing. It was sheer panic and a totally surreal situation,” remembers Hayley, 32.
Doctors at Alder Hey hospital initially considered meningitis and, while Holly remained in intensive care, performed a series of tests on her.
It was discovered she had a rare metabolic condition and had suffered severe brain damage.
“It was as if someone had taken my life and put it in a washing machine on spin. If your child is ill you can make them better but we couldn’t do that for Holly.
“At the end of three weeks in hospital the decision was made to turn off her life support machine,” says Hayley.
“All the family came in to say goodbye and then Gary and me and Holly were taken to a small room and simply waited for her to fall asleep.”
But then a miracle happened.
“She simply turned her head, opened her eyes and looked at me. That’s when I knew we had a fighter.”
But in the coming weeks and months Hayley admits there were times when it was difficult to adjust to what life might hold for them.
“You have all these aspirations and hopes for your kids; I’d had this little girl and imagined her doing ballet lessons and us going shopping together and now we were faced with a very different scenario.”
Doctors warned her parents that she may not live beyond her second birthday.
“We decided to bring her home. If we only had a short time with her we wanted it to be as a family.”
But under her parents’ devoted care Holly has just marked her seventh birthday.
She has complex medical needs including epilepsy, cerebral palsy and chronic lung disease. She is also blind and oxygen dependant and is fed through a tube in her stomach.
Hayley admits there have been ‘dark periods’ where they have seen their daughter back on life support.
“We never know what the next day will bring. But no parent gets a handbook and this is the way life is now. Is all the hard work worth it? Yes, 110%.
“Hayley is so strong and so brave; I’m full of admiration for her.
“She can’t say ‘mum’ to me but she tells me all I need to know with her eyes. She loves water and Dora The Explorer and she adores her cuddles. When Joshua and her baby sister Ruby lie next to her Holly’s eyes simply light up; the baby takes her hand, kisses it and says ‘baba’ and she loves it.”
Hayley is frank about the difficulties faced in looking after Holly, a 24-hour-a-day regime dominated by rounds of administering medicine and feeds, hospital appointments and monitoring her well-being.
One parent also stays by her side each night to keep her comfortable.
“It is hard and as a couple it can take its toll. We can’t do a lot of things other families take for granted, either, like go swimming together.
“But we’re a strong unit and wouldn’t change things for the world. And we have the wonderful Claire House.”
Initially fearful of the word ‘hospice’ Hayley and Gary first visited Claire House some years ago.
“In my mind even the word conjured up the idea of dying but we went and it was wonderful. There’s joy in the air, not sadness.”
Now Holly attends Claire House regularly, enjoying the hospice’s sensory and arts and crafts rooms or experiencing an aromatherapy massage. She has also stayed there to allow Gary and Hayley a break and to spend time with their other children.
“We simply couldn’t cope without them. They operate a hospice to home service too which I used the other day. I had so much to do, so much shopping to get and was quite stressed by it all.
“The staff came to the house, took care of Holly and when I came home had even put some decorations up; that’s the sort of people they are.”
She is passionate that the service they offer should not be a luxury for parents like her and Gary.
“We don’t know how long we have Holly for so we try to cherish every moment. Claire House helps us do that.”
18 November 2008
Vital: Music therapy changes Beth's life
WHEN doctors told Angela Campbell and David Fargher their daughter had cerebral palsy, they were devastated.
But there was another shock to come as a result of her brain injury-which is thought to have been caused by complications at birth - because Beth also had epilepsy.
At first the couple from Hillington, in Glasgow, struggled with Beth's conditions. She used to have up to 100 seizures a day.
Mum Angela, 37, said: "Beth can't sit up, stand, walk or feed herself. She's totally dependent on us. It can be really challenging and difficult at times.
"We go through good and bad spells. When Beth has a seizure it can last several minutes, but fortunately she doesn't know what's happening. I talk to her until she comes round."
But recently Angela, a former employee of Glasgow city council, and David, who works in construction, have seen a big improvement in their daughter.
And that's largely down to her regular music therapy sessions run by Nordoff-Robbins, recommended to them by a friend.
Angela describes the programme as "life-changing".
Both she and David have seen five-year-old Beth develop beyond their expectations since she first started weekly classes in February 2007.
And it is not just wheelchair bound Beth - who now has up to 12 seizures a day - who has benefited. Mum Angela has too.
Under the direction of the charity's music therapist Mary Veal, Beth and Angela play songs together using instruments including guitars and banjos. The mum-of-one, who has given up work to become her daughter's full-time carer, added: "Beth loves listening to music.
"When she's really upset, we play her a song and it calms her down. Her whole face lights up "So we gave Nordoff-Robbins music therapy a try and it really works for her.
"I have noticed a huge difference in Beth, particularly with sensory issues. She didn't used to like to touch or be touched. Now she does, she's focusing more and she follows you around the room.
"She wasn't able to do that before. There is still so much she can't do but she has progressed.
She has come on in leaps and bounds and it's down to the music therapy sessions.
"They have changed the way Beth is and I'd like to thank them for all their help."
One woman partly responsible for Beth's development over the last 20 months is Nordoff-Robbins' music therapist Mary Veal. Angela and David are indebted to Mary for her "patience and perseverance".
Angela added: "Mary has helped us immensely with Beth. She's brilliant at her job and has made a huge difference.
"I owe her a lot. Before we went to the sessions, Beth was upset all the time and wouldn't settle. It was so tiring, but the music sessions have made her a lot calmer.
"To see Beth enjoy something so much has been great."
Mary, head of region for Nordoff-Robbins, said: "We are not there to improve a child's ability to play a musical instrument, we are there to improve their movement and encourage them to have fun.
"Everyone has an inherent ability to respond to music. It motivates and sustains concentration.
"We create an environment so it empowers the parents. They have an opportunity to play with their children and engage with them.
"The best thing is becoming less needed in the sessions, but having the opportunity to share this unique experience."
Nordoff-Robbins, which receives no statutory funding, is to receive a boost this weekend as all proceeds from Saturday's Tartan Clef Awards will go to towards the children's charity's running costs, which top £400,000 each year.
Last year the Awards generated aquarter of that total, and this time organisers are hoping they can smash the £100,000 target.
For more information on Nordoff-Robbins Music Therapy in Scotland and the Tartan Clef Music Awards, log on to www.nordoff-robbins.co.uk or www.tartanclef.org. Donations to the charity can be made by logging on to the website and clicking on 'donations'.
But there was another shock to come as a result of her brain injury-which is thought to have been caused by complications at birth - because Beth also had epilepsy.
At first the couple from Hillington, in Glasgow, struggled with Beth's conditions. She used to have up to 100 seizures a day.
Mum Angela, 37, said: "Beth can't sit up, stand, walk or feed herself. She's totally dependent on us. It can be really challenging and difficult at times.
"We go through good and bad spells. When Beth has a seizure it can last several minutes, but fortunately she doesn't know what's happening. I talk to her until she comes round."
But recently Angela, a former employee of Glasgow city council, and David, who works in construction, have seen a big improvement in their daughter.
And that's largely down to her regular music therapy sessions run by Nordoff-Robbins, recommended to them by a friend.
Angela describes the programme as "life-changing".
Both she and David have seen five-year-old Beth develop beyond their expectations since she first started weekly classes in February 2007.
And it is not just wheelchair bound Beth - who now has up to 12 seizures a day - who has benefited. Mum Angela has too.
Under the direction of the charity's music therapist Mary Veal, Beth and Angela play songs together using instruments including guitars and banjos. The mum-of-one, who has given up work to become her daughter's full-time carer, added: "Beth loves listening to music.
"When she's really upset, we play her a song and it calms her down. Her whole face lights up "So we gave Nordoff-Robbins music therapy a try and it really works for her.
"I have noticed a huge difference in Beth, particularly with sensory issues. She didn't used to like to touch or be touched. Now she does, she's focusing more and she follows you around the room.
"She wasn't able to do that before. There is still so much she can't do but she has progressed.
She has come on in leaps and bounds and it's down to the music therapy sessions.
"They have changed the way Beth is and I'd like to thank them for all their help."
One woman partly responsible for Beth's development over the last 20 months is Nordoff-Robbins' music therapist Mary Veal. Angela and David are indebted to Mary for her "patience and perseverance".
Angela added: "Mary has helped us immensely with Beth. She's brilliant at her job and has made a huge difference.
"I owe her a lot. Before we went to the sessions, Beth was upset all the time and wouldn't settle. It was so tiring, but the music sessions have made her a lot calmer.
"To see Beth enjoy something so much has been great."
Mary, head of region for Nordoff-Robbins, said: "We are not there to improve a child's ability to play a musical instrument, we are there to improve their movement and encourage them to have fun.
"Everyone has an inherent ability to respond to music. It motivates and sustains concentration.
"We create an environment so it empowers the parents. They have an opportunity to play with their children and engage with them.
"The best thing is becoming less needed in the sessions, but having the opportunity to share this unique experience."
Nordoff-Robbins, which receives no statutory funding, is to receive a boost this weekend as all proceeds from Saturday's Tartan Clef Awards will go to towards the children's charity's running costs, which top £400,000 each year.
Last year the Awards generated aquarter of that total, and this time organisers are hoping they can smash the £100,000 target.
For more information on Nordoff-Robbins Music Therapy in Scotland and the Tartan Clef Music Awards, log on to www.nordoff-robbins.co.uk or www.tartanclef.org. Donations to the charity can be made by logging on to the website and clicking on 'donations'.
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