I was first diagnosed with epilepsy in 1982. It took a while to get the dosage right but we got there and for 20 years the drugs did their job – until August 2017, when I had a seizure while driving, and then again in January 2020 when I had the most distressing interruption to life.
One minute I was in Caffè Nero doing emails, the next I was in intensive care on a ventilator, having experienced an episode of convulsive status epilepticus – a prolonged seizure or run of seizures that can be a life-threatening medical emergency. Since then, I have recovered physically but only now am I learning to live with the knowledge that another major interruption to life may be around the corner.
My story is not unique. And why this happened, on this particular day, no one really knows. But it was frightening, not just for me, but for my family too. As Dr Rhys Thomas states on the title page of this edition of Focus Spring 2021 – what we do know is that research is the answer. For people like me and for the people who have generously shared their stories in this publication. For Nicole’s son, newly diagnosed, for Joyce, whose sister tragically died so young, and for Craig, who is managing the often-debilitating side effects of antiepileptic medications.
Research is the only way we will achieve a life free from epilepsy, but as our #ALifeInterrupted report details, investment in epilepsy research is chronically underfunded. As someone who spent 33 years working in government relations, I know that the most influential voice – the voice most likely to bring about change – is the one belonging to people living with the condition.
We need to invest in the research that will be life changing for so many. We need to harness the power of our community to bring about critical policy change. We need your support at this crucial time – anything you can do to help will not only be greatly appreciated but it will also mean we’re much more likely to succeed.
With best wishes