Intractable (Drug Resistant) Epilepsy;
1 in 104 people are affected with epilepsy in the UK** and over 50 million worldwide. It is one of the most common serious neurological conditions with approximately 30 different epilepsy syndromes and over 38 different types of seizures.
The majority of cases of epilepsy can be treated successfully with modern anti-epileptic drugs (AED’s) used either as single agents or in combination. However, approximately 30% of cases are classed as having drug-resistant or intractable epilepsy, where seizures persist despite the appropriate use of two or more AED’s and the possibility of achieving seizure freedom with additional medication is extremely low.
Ketogenic Dietary Therapies:
The Ketogenic Diet was successfully used in the treatment of child and adult epilepsy in the 1920’s.
As AED’s became more available the diet was used less and less often, with expertise being lost from all but a few centres. However, there has been a resurgence of interest in Ketogenic Dietary Therapies for children in recent years, due to its efficacy in otherwise intractable cases.
The treatment has been clinically validated in a number of studies and a randomised controlled trial from Great Ormond Street Hospital (Neal et al 2008).
Matthew Williams (20) suffers with a catastrophic form of epilepsy called ‘Dravet Syndrome’ and his seizures started when he was 9 months old. Emma, his mother, asked if Matthew could try the Ketogenic Diet when he was 2 years old, but she was told the diet didn’t work. So she battled on, trying innumerable medications which didn’t help Matthews’ seizures and which caused devastating side effects.
Six years later, Professor Helen Cross began a research trial of the Ketogenic Diet at Great Ormond Street Hospital (GOSH). Matthew and 144 other children with severe epilepsy were enrolled on the trial. Within 2 weeks of starting the diet Matthew’s seizures had reduced by 90% and within 8 months he was off all medication. Sadly for Matthew, the damage had been done. Years of seizures had caused terrible brain damage, his family had broken apart and Emma was now a single mum to Matthew and his younger sister Alice.
Inspired by Matthew, she set up Matthew’s Friends in 2004 to provide information, education, resources and support for other families. The charity, which was started at Emma’s kitchen table, grew at a phenomenal rate. Emma is not only the Founder/Chief Executive of the Matthew’s Friends Charity and Director of the Matthew’s Friends Clinics, but she also works as the Parent Representative for KetoPAG
(Ketogenic Professional Advisory Group for the UK and Ireland), she runs the UK Branch of the Glut1 Deficiency Foundation, acts as an International Patron for Desi (Diets for Epilepsy in India) and is also the only non-medical member of the International League Against Epilepsy Global Task Force for Dietary Treatments for Epilepsy. Most recently she has been honoured with an MBE from HM the Queen for services to children with epilepsy.
Matthew’s Friends Today:
Matthew’s Friends has a distinguished medical board, chaired by Professor Helen Cross, the Prince of Wales’s Chair of Childhood Epilepsy. It has raised over £70,000 for GOSH’s research into the Ketogenic Diet, as well as providing funding for numerous centres around the UK. 2011 saw the registration of Matthew’s Friends New Zealand and is currently forming a new branch in Canada, as the organisation expands to include these regions as well as being involved with over 20 other countries worldwide in supporting the use of ketogenic dietary therapies.
The charity has now expanded its remit to help adults that are failing medication with the use of the Modified Atkins Diet and Low Glycemic Index Treatment and works with the leading experts in this field. More recently the charity is now working in the field of certain types of brain cancer and ketogenic dietary therapies, although it is early days in the field, the contribution that Matthew’s Friends makes towards making these diets more widely available and ensuring it is properly supported is internationally recognised by both parents and medical professionals.
The Charity Provides:
-A comprehensive website which hosts a busy parental support forum and medical forum as well as providing latest research and information on dietary therapies.
-A helpline which is available to families 365 days a year.
-National and International workshops and conferences for both patients and epilepsy health-care professionals.
-An International network which includes USA, Canada, Australia, New Zealand, South Africa, Holland, Denmark, India, Hong Kong, Malta, Turkey and Portugal.
-A Professional Advisory and Training Service.
-Educational literature, Ketogenic Diet starter packs and Patient files supplied free of charge to all UK Ketogenic Centres for their patients.
-Matthew’s Friends Clinics – providing Ketogenic Dietary Therapies for all who are currently unable to gain access to local services.
NONE OF THIS IS POSSIBLE WITHOUT…… Fundraising
Matthew’s Friends does not receive any government funding and are totally reliant on fundraising and donations. By the time our families find us they are usually in a VERY bad way, dealing with a worrying and fraught situation, often fearing for their child’s life. Asking them to fundraise at this time to help provide services is not desirable, therefore the small Matthew’s Friends team have cajoled and badgered their friends and families to help fundraise over the years. We welcome ALL help and are delighted to provide resources such as a justgiving page for sponsored events, running vests, sponsor forms, t-shirts and anything else that we can for those willing to support us. Please do contact us if you can help.
Telephone: Julie Edwards 01342 836571
Matthew’s Friends c/o Young Epilepsy, St Piers Lane, Lingfield, Surrey RH7 6PW
** JEC (Joint Epilepsy Council) 2011 statistic