Jack, 21, has autism and refractory epilepsy, which is both complex and difficult to manage with drugs. He has any number of different seizures including tonic clonic, complex partial and absences. He can have anything up to 14 seizures a week, making life difficult for both him and his family. If he just has one seizure it can wipe out his entire day as he may be exhausted.
Jack has had epilepsy his whole life and has been studying at Young Epilepsy’s St Piers College for the past four years. Staff have helped him to control his anger issues and helped develop his independence and confidence. “Sometimes I have absences where I just blackout and sometimes I remember a bit and sometimes I don’t remember anything. My family are very caring about it, although since I have been at Young Epilepsy my confidence has really improved. They are so caring about so much. I’ve made tons of friends whereas in the past I was really vicious and angry about the whole situation, now all that has practically gone. I have lots of patience and I’m controlling my anger a whole lot better.”
One of the things that Jack found hardest of all was the way he was treated by one particular boy at his secondary school, who he still harbours bad feelings for. “I’ve had a lot of discrimination against me because of my condition. I have been a victim of bullying. At school sometimes when I tried to use my magnet over my VNS stimulator there was this boy, who I hate now, who used to knock the magnet out of my hand to make me have a seizure. It made me frustrated. He was just horrible.” Jack says he can be shocked by the way people react to epilepsy, but that overall he has been supported by his family and the people around him at St Piers College.
Filming the BBC Three documentary for Jack was a way of helping others to understand more about his extremely complex condition.
“With regard to the filming I really enjoyed it, although I found it a bit embarrassing as well! I did it to prove to people what epilepsy is and how they can really help.
“I think now if someone came and asked me about epilepsy and what it means I think I would explain to them how my condition affects me, and how many different types of seizures there are. I’d like more people to know about it.”
Contact us: 01342 832243 Email: firstname.lastname@example.org Young Epilepsy, St. Piers Lane, Lingfield, Surrey RH7 6PW
Young Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE) Registered Charity number 311877 (England and Wales)
©Young Epilepsy 2015