Dr Rhys Thomas is a Clinical International Fellow & Honorary Consultant in Epilepsy based in Newcastle and Trustee of Epilepsy Research UK. Dr Thomas is leading on the development of our Shape Epilepsy Research Network, which will build the UK’s largest ever epilepsy patient population to influence and shape research. Here he provides a personal account of why the #ALifeInterrupted campaign is so important for everyone affected by epilepsy.
Epilepsy is common, and seizures interrupt lives. Seizures can strike on any day, from your first day to your last. They do not respect birthdays or wedding days, first dates or crucial exams. Unlike other common neurological disorders, epilepsy research is drastically underfunded at a national level. It is time that people with epilepsy received their fair share.
I clearly remember the first seizure I saw; my school friend had epilepsy. It was not talked about and we were never told what it was or how to look after him. When he had a seizure on the school field while playing football, break-time was immediately over. We were told to trudge back into the classrooms while an ambulance pulled on to the schoolyard to take him away. A life interrupted.
My uncle was a physics whizz and loved puzzles. He dreamed of being Q from James Bond and designing new gadgets. Just as he was planning to leave home to find freedom at university, he developed epilepsy and was put on medications that made him feel numb. A life interrupted.
My great uncle married a woman, who told him on their wedding night that her GP had insisted that she must never consummate the marriage. She was told that the stress would bring on a seizure. She had felt too terrified to tell him beforehand of her epilepsy. There was too much epilepsy ignorance and stigma for them to know if the GP’s advice was correct, and they lived a long, happy but childless life. A life interrupted.
Epilepsy is common, and so I could tell you more stories from my family and from other people’s. Stories of bruises and burns and breaks, of people being robbed when recovering from a seizure – of their dignity or of their possessions. In 2020 we are all living in fear; that at any moment the next person to catch coronavirus could be us, fears for our health and our family’s. This is the day to day experience of people with epilepsy, uncertain if today will be the day. A life interrupted.
We have an answer, a solution. Research brings hope, research brings opportunity and research brings cures. Nobody said that this would be easy, and so, despite the squeeze from COVID-19, we are looking to increase the funding share of research into epilepsy and engage people with epilepsy.
– Dr Rhys Thomas