Blog #120: IS YOUR EPILEPSY CURRENTLY WORSENING? YOU’RE NOT ALONE.

 

The United Kingdom’s (UK) charity for young people with epilepsy, YOUNG EPILEPSY, evaluated the difficulties under lockdown for the 112,000 young people with epilepsy. I would extrapolate these difficulties to the general epilepsy population in the United States. You are not alone.

Key findings from the study of nearly 300 young people with epilepsy and their parents and carers probably parallel your experiences in the U.S. under COVID-19. These are:

• 30% of respondents reported an increase in seizures during lockdown - this may be related to a change in routine and lack of the usual support mechanisms.
• The majority of young people with epilepsy report deteriorations in sleep (72%) and mood (63%) in lockdown - young people with epilepsy are four times more likely than their peers to suffer from mental health issues. Their parents and carers themselves also reported increased stress and anxiety.
• Nearly a quarter (23%) also say that they've had clinical procedures or investigations cancelled during lockdown - in addition, 61% are more reluctant to go to hospital, with both issues likely to increase stress if it means a young person’s epilepsy going unmanaged.
• Nearly a quarter (23%) say that they have had trouble getting medication during lockdown - respondents mentioned pharmacies not stocking their regular medication, having to drive further to get the medication or switch between brands or types of medication, while others were frustrated that existing difficulties in obtaining medicines had been exacerbated.
• Most respondents (82%) say they worry that catching coronavirus would impact negatively on the frequency and severity of seizures - fever is a known trigger of seizures in some epilepsies, and one respondent said they had their first seizure in five years while suffering from Covid-19.

People with epilepsy already feel isolated; they face significant challenges even before the Covid-19 pandemic, including a higher likelihood of unemployment and mental health issues compared with the general population.

Comments covered by Medical Sciences News by Mark Devlin, CEO of the UK’s Young Epilepsy organization, report lockdown has exacerbated the many challenges which children and young people with epilepsy already face. Just 34% of working-age people with epilepsy in the UK are employed, and many have co-existing conditions such as autism which create further barriers to work, meaning that the recession offers bleak prospects for young people.

Young Epilepsy hopes that in the lifting of lockdown and recovery from the pandemic, the UK’s National Health Service and wider society will learn lessons in how to provide the support to help people with epilepsy lead the life they want to live. Wider access to remote health appointments is one specific measure, as is the urgent rescheduling of any treatment or appointment postponed due to Covid-19 pressures.”

One of Young Epilepsy’s representatives said: “Throughout this time I've had to postpone several appointments, and missed blood tests that I'm supposed to get every three months to make sure my main antiepileptic drug levels don't get too high and potentially put me in a coma. My meds, which were finally being ordered automatically by my pharmacy at the right time each month after a year of dose changes which confused everyone but me, are now messed up again with them giving me two months of some and not others.

“It's these small uncertainties and frustrations that add up and amount to the kind of stress that can cause a sudden peak in seizures. My seizure control has already dropped in the last month and the fear that it could continue to get worse with this ongoing stress is concerning —nobody wants to end up in emergency departments during a pandemic.”

In the UK in April Young Epilepsy launched its ground-breaking digital platform, The Channel. This platform, co-produced with young people, was launched because the charity recognized that young people with epilepsy have complex and often poorly met needs - even outside of lockdown - and that there was an appetite for reliable, specialist information provided remotely. Content on The Channel, which has already been accessed by thousands of users, includes advice and guidance on a range of topics from health and wellbeing to the personal and social lives of young people with epilepsy - including staying healthy in lockdown, and issues around Covid-19.

The Epilepsy Foundation of America provides similar digital support.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.