Living with epilepsy - Worries and wishes

25 Mar 2023

Claire Bishop is mother to five children aged between 7 and 16. Her 13 year old boy Alfie and one of her twin daughters Millie live with epilepsy. Her other twin daughter has neurofibromatosis type 1. There are a lot of medical appointments to attend, medicines to try, side-effects to manage, seizures to monitor and manage - and all around a busy family life.

Claire spoke to us ready for Purple Day on March 26th to help explain the impact epilepsy can have on those in a caring role. She also shared some of her experiences with parenting and caring for a family where epilepsy is part of daily life.

Worries and wishes

Asking Claire what would make the biggest difference to her daily life, she is realistic about the likelihood of a cure for epilepsy, but brings up her hopes that there could be a way to manage the 'unknowns' of the condition more.

'Some sort of magical way of looking ahead would be brilliant. I wish more was known about it, that there were more ways to control it. If there was more research into how we can monitor likely activity we would have some control over it all.'

Claire is also aware of the challenges facing the health service and what that could mean for her family in an emergency, particularly as with prolonged seizures, both her children often experience respiratory arrest and Alfie can experience cardiac arrest, too.

'We're so lucky, we've always been able to get help quickly. I am a bit more worried now, though, since COVID, if an ambulance can't get here, we don't have oxygen for them. That is a real worry.'

For Claire, epilepsy is a certain part of her future, and being vigilant on behalf of her children is her reality. Hopefully, investment in research can improve our understanding of epilepsy and increase the treatments available, whilst through education we can support earlier detection, increased knowledge, and better management.

Optimised education, compassionate care

Epilepsy Academy seeks to raise awareness of epilepsy, equipping professionals to deliver compassionate, holistic care that transforms people's lives.