Battling discrimination while seeking a cure for epilepsy
Epilepsy Imogen developed epilepsy after an accident, and after 17 years of drugs and surgery she is still researching cures and calling for more awareness.
Imogen was involved in a hit and run incident aged nine. She was diagnosed with severe brain injury, resulting in memory loss, learning difficulties and epilepsy.
Imogen, now 26 and living in North London, says: “The type of seizure always changes, but I usually do things without knowing. I once left my dog in the park when I had a seizure and walked home without him. Many times I have woken on the ground with people holding my hand. Auras are regular. Tiredness, stress and lack of fluid raise the likelihood of seizures and mint seems to be a trigger too.”
Imogen found it hard to control her seizures, though she has tried several medications and a VNS implant. Brain surgery last year reduced her seizures from 12 to three a month, but she is still seeking a cure and keeps updated about any new treatments.
Seeking a cure
She says: “I’d do anything to be cured. I recently found out that surgery offers a 50 per cent chance of cure, but there is a risk of severe memory loss and paralysis. I am still making my decision, while also considering stem cell therapy in Germany.”
Imogen is going to try a new medication and is researching non-invasive surgery in the United States. She is also having cognitive behavioural therapy every week. The effect on her lifestyle is more important than the seizures, she says, as their unpredictability means social dates such as choir rehearsals and salsa lessons, are cancelled.
“It is time epilepsy was known by everyone and people with epilepsy were given as many rights as those without it”
However, she says: “I’m proud of achieving a BSc in animal behaviour and animal welfare and want a career in wildlife conservation, but jobs usually require a driving licence. Meanwhile, I’m volunteering for the London Wildlife Trust and have begun a course in psychology of mental health at Birkbeck University as I am passionate about neurology.”
She adds: “I am still looking for a job. Employers have turned me down, I suspect because of epilepsy. People only know of epilepsy through fiction and suspect only grand mal seizures exist.”
She says: “My goal for 2014 is to do lots of campaigning in aid of mental health and put an end to discrimination. It is time epilepsy was known by everyone and people with epilepsy were given as many rights as those without it.”