Amy is 25 and has epilepsy, learning difficulties and a metabolic disorder called ornithine transcarbamylase deficiency, or OCT, whereby she lacks enzymes that break down proteins.
For the past three years Amy has been studying at St Piers, at Young Epilepsy. At their graduation ceremony in July she was named Student of the Year.
“I didn’t suffer from epilepsy until the age of 10. In a way I suppose I felt like it really wasn’t fair. I have a lovely brother (Matt, 21) who has no special needs at all. I see him doing things by himself and being independent and I wish I could do those things. I can’t really be alone.”
Amy experiences complex partial seizures and absences. “When I have these they’re really out of the blue. I sometimes think there is an aura all around me just before I have one that can start them off.
“People sometimes tell me things that I’ve done during a seizure that I will just never remember. I’ll do things like fiddle around and I’ll do funny things, it’s really strange.”
Amy can never be on her own as her seizures can happen anywhere and at any time.“One of the hardest things about my epilepsy is that I can’t do things on my own. If I want to build on my independence, I can’t. Sometimes all I want is a bit of time to myself.”
Raising awareness through the documentary was important for Amy, but she found it hard realising what other people see on a daily basis. “I loved the filming for the documentary, however I got very emotional when I watched myself having a seizure.”
Amy’s next move is to The Meath Epilepsy Trust in Godalming, close to her East Sussex home, which offers her supported living. She hopes to find work in an art gallery nearby as she is passionate about art and creating things. “Anything that involves creativity I love, I would rather make stuff rather than buy it. I’m really hoping to get a job in the art gallery and I’m really positive about the future.”
Contact us: 01342 832243 Email: email@example.com 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