Jack is a young adult living with global developmental delay. This is his story.
John attends the residential St Piers College at Young Epilepsy. This is his story.
Amanda was diagnosed with epilepsy age 9. In this video she discusses how the condition has affected her life.
Find out what life is like when you have a condition such as Epilepsy. Follow Sian and learn how she copes with epilepsy on a day to day basis.
What is epilepsy and how does it affect young people? Watch to find out how Young Epilepsy helps patients.
Learn about one of the leading charities for young people with epilepsy and how Young Epilepsy work to educate and improve the lives of its students.
Watch this video to find out what kind of research Young Epilepsy does and how this helps young epilepsy sufferers.
Dr Krishna Das Consultant Paediatric Neurologist
Epilepsy is actually not just one condition. It’s a manifestation of people having recurrent seizures. By seizures, I mean the manifestation of abnormal electrical discharge in the brain.
Broadly there are two main categories. One is what we call the generalised epilepsy where we think the whole of the brain is affected very quickly. Usually the child or the patient is unaware and loses consciousness. Both sides of the body are also involved. The other category belongs to the types of focal epilepsy, where it is believed to involve networks in one area of the brain. These types usually don’t spread to other parts.
The classic epilepsy that is well known in TV or movies is the tonic-clonic seizures where somebody falls to the ground, jerks and cries out. These tonic-clonic seizures are very obvious and are mainly with motor manifestations.
There are other types of epilepsy where people simply just switch off and don’t do very much. This is what we call absences. There are other types where the patients can suffer from little twitches or little jerks while other types, particularly the focal epilepsy, where patients can experience some funny sensations and can appear confused, agitated or frightened. You may not see anything externally happening as it is all in their mind.
Nina Solomon Epilepsy Specialist Nurse
Epilepsy affects people very differently. There are over forty different types of seizures and depending on what seizure type you have, whether you get a warning and how many seizures you have will affect people differently. Some people have numerous seizures whilst some people will have very few. Some will have some that are easily controlled with anti epileptic drugs but others will struggle to have better control.
Patient: I have absent seizures because I have Petit-mal epilepsy but its all dependant really. This is because my seizures come about from things like tiredness and illness so roughly I have about four or five a month, but they only last about a minute and a half. I wouldn’t say it affects my day-to-day life just because, apart from taking medication morning and evening, I can do everything. I’m in mainstream school and things like that. On the other hand I can’t learn to drive currently because of my seizures. Because I’ve had it from such a young age I’ve been able to deal with it and so that’s normal to me. Its not like I’ve had to adapt to having to not drive or not drink alcohol.
Emma Tingley Education Officer
Epilepsy impacts young people in a variety of different ways. All the time that they’re having seizures we have to remember that their brains are still developing. For children and young people they also have lots of other things going on in their lives that they’re coping with. Like being part of a class at school, making friends and their relationships with their family and pier group. Having epilepsy is just one other thing to cope with on top of lots of other issues.
If somebody witnesses someone having a seizure the most important thing to do is make sure that person is safe. We don’t recommend moving the person unless they are in imminent danger such as near an open fire. We then want to cradle the person’s head and put something soft underneath it. When you cradle the head in your hands you are protecting the head. Really you don’t need to do much more than that other than make a note of the time so you know when it started and when it finished.
We are working really hard in schools to bring up a generation of people who can talk openly about epilepsy, have an understanding of it, know how to keep somebody safe and how to include them in every activity that children like to do.
Friendships are important for any child, particularly for a child with epilepsy. It is important that their friends are understanding, aware of the condition and know how to look after them if they need help.
Teenagers desperately want to be different in many respects, but they don’t want to be different by having epilepsy. They need a pier group around them who can support them.
Patient: Because I cant learn how to drive I use my friends and my freedom pass to my advantage, and they are all my chauffeurs.
Gill Gallagher National Services Manager
The purpose for national services at Young Epilepsy is to share the expertise that exists here at Young Epilepsy with professionals and families across the UK. For example, one of our projects is our Epilepsy Education for Schools programme where we have a team of professional education officers who go into schools across greater London and the south east if England at the moment. They provide assemblies, lessons and training for teachers and pupils in those schools.
Young Epilepsy can help in a variety of ways with newly diagnosed children and their families.
David Ford Chief Executive
I think what is critical is our research programme. Its not just about the education and the health services working together here, but its also about us striving out to find better ways of working and supporting the children. We then share that information with other professionals around the UK.
Our helpline has a team of workers who are highly trained and understand the condition. It includes epilepsy specialist nurses who are able to talk with families and explain and understand what they are going through. We also have a range of handbooks, which are very useful resources. They explain in very clear and easy to understand language what epilepsy is, how it’s diagnosed, what kind of treatment to expect and other issues that families would be concerned with.
For more information go to youngepilepsy.org.uk
10763 Published October 2012comments powered by Disqus