Epilepsy Week: children’s charity celebrates research investment | Action Medical Research

Epilepsy Week: children’s charity celebrates research investment

16 May 2013

Children’s charity Action Medical Research is marking National Epilepsy Week (19-25 May 2013) by highlighting its funding of epilepsy research.

Around half a million people in the UK are estimated to have epilepsy, an estimated 60,000 of whom are children and teenagers under 18.  Existing drugs have side effects which can be unpleasant and, sadly, around one in three are living with epilepsy that is difficult to control with this medication. One such case is 12-year-old Sophie Whitehead. [See case study below]

Surgery: offering hope of seizure-free life
If the drugs don’t work, the next option is to consider surgery, which offers the potential of a life totally free from seizures. Revolutionary methods of scanning that identified the affected parts of the brain were developed by teams of experts awarded grants by Action Medical Research between 1992 and 2005. Sadly, before these projects began many patients considered for surgery could not go ahead because it was not possible to pinpoint exactly where seizures started in their brains.

Two different research teams at University College London are also currently investigating whether a further advance in brain scanning can enable doctors to offer the life-changing surgery to even more adults and children with uncontrolled epilepsy.

The gene hunt
Juvenile myoclonic epilepsy (JME) is a common form of epilepsy, affecting around 5-11 per cent of all people with epilepsy. Action funded research to look at the genetic causes of JME. The work has led to genetic testing and a clinical service for people with epilepsy that is inherited. Genetic counselling and targeted genetic testing help diagnosis and more informed and effective treatment.

Epilepsy, sleep and learning disability
Evidence suggests around one person in every five with epilepsy also has a learning disability. A new project funded by Action, at University College London Institute of Child Health, is investigating whether learning problems in children with epilepsy are linked to disruption of sleep patterns and to epileptic activity within the brain. If they are, better control of children’s epilepsy, particularly during the night, might improve learning.

Medical research can save and change children’s lives. Yet surprisingly, medical research into conditions that devastate children’s lives is poorly funded. The charity is also currently funding research into conditions including Down syndrome, premature birth, meningitis and some often forgotten rare diseases.

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High-res pics of Sophie can be downloaded from these links:



CASE STUDY: Sophie’s story

Sophie was diagnosed with epilepsy as a baby and during her early years she was given drugs to control her seizures. Between the ages of eight and 10 she was able to stop taking her medication and was free of seizures. Then in August 2010, aged 10, she had a severe seizure and was admitted to hospital.  It took three weeks for her condition to be stabilised.

Now, 12-year-old Sophie has to take seven different tablets twice every day. “She can go six weeks without a seizure sometimes,” says her grandmother Caroline. But she still has a seizure every month or so.

Sophie dreads having a seizure at school. Most of the children who know that she has epilepsy have been supportive, but there have been one or two who have made unkind comments. “She just wants to be like her peers and hates being different. One of her main fears is that people think she is stupid,” says her grandmother Caroline.

At school Sophie has had some difficulties with learning, especially with maths. “We think that she may have little seizures whilst in class so she misses some of the information given,” Caroline says.

Sophie is due to have surgical treatment for her epilepsy. “There are a lot of big 'ifs' about surgery. Sometimes I'm scared it will take a bit of me away. But if it's successful it will be really good for my family to be less worried about me. And for me, freedom from seizures and their impact on my life will be brilliant,” Sophie says, beaming.

For further press information on Action Medical Research and the events they run please contact:
Toni Slater, Communications Manager
T: 01403 327478
E: tslater@action.org.uk
W: action.org.uk

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Action Medical Research is a UK-wide charity saving and changing children’s lives through medical research. We want to make a difference in:

  • tackling premature birth and treating sick and vulnerable babies
  • helping children affected by disability, disabling conditions and infections
  • targeting rare diseases that together severely affect many forgotten children.

Just one breakthrough, however small, can mean the world.

Charity reg.nos 208701 and SC039284.

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