Hello. I’m Barbara. Epilepsy has dominated much of my life and that of my family. I developed the condition aged 10 and I was teased throughout my school years. I was also told I'd never follow my dreams of becoming a teacher or go to university.
My seizures became more frequent when I became a parent which had a huge impact on my family. We had to have an au pair and my daughters had to cope with my frequent accidents. They'll never forget the day I nearly drowned in the bath and had to be resuscitated. When my seizures were regular, my memory was seriously affected and my children described me as a zombie. A doctor even told me one day they were considering putting my children into care for their own safety.
But I didn’t let these challenges stop me from living my life. I became a subject specialist librarian and studied the history of art at the University of London. I also did 3 years’ research for a published thesis on music education in primary school.
As my epilepsy improved, I've been able to help other people as chair of Epilepsy Action’s North London Branch. The branches are a lifeline for many people with epilepsy who have problems at work, experience stigma, memory problems, loneliness and depression. Doctors provide medication to help control seizures but learning to live with a diagnosis of epilepsy is equally important.
Epilepsy Action’s advice has also helped me to understand others and the practical aspects of the condition. For example, when one of my daughters, who also has epilepsy, was pregnant and whose medication could have harmed her unborn child, I could talk to her doctors to make sure she had additional tests.
For Purple Day this year, I want to talk about the life-changing work of the Epilepsy Action Helpline. Your donation will mean the Epilepsy Action Helpline can be there on evenings and weekends to answer more calls, emails and Facebook messages from people with nowhere else to turn.