What if you could have a life free from epilepsy? Many people now live without seizures thanks to treatments developed through research. But for one third of people living with epilepsy, their seizures still do not respond to medication. This month, we’re looking at research into innovative epilepsy treatments which could help more people live seizure-free.
When Sophie was diagnosed with epilepsy in 2011, her family wanted to know what it might mean, and what might have caused it. Sophie, aged 11 at the time, just wanted the whole thing to go away.
However, anti-epilepsy drugs did not work for Sophie, so her seizures remained uncontrolled. At school, despite her best-efforts Sophie struggled with most subjects and taking part in school plays or sports was near impossible. At home, her parents were on high alert in case she injured herself while having a seizure. “Even things like washing myself had to be so controlled,” recalls Sophie, now 21. “I remember distinctly my mum running up the stairs if I ever dropped something while I was in the shower.”
Sophie’s experience is sadly too common; up to a third of people’s epilepsy is drug resistant. New medications and new treatment options would be life– changing. However, the process of drug development is time-consuming and expensive, and the chances of success are disappointingly low.
Professor Richard Baines is familiar with these challenges. With the support of Epilepsy Research UK, he has been trying to turn the results of his team’s lab work into a new drug to reduce seizures. In his blog later this month, Richard describes the ups and downs of their journey from ‘lab bench to bedside’, and explains the challenges involved with developing new drugs.
With many hurdles to overcome, it is vital to support basic lab research to create as many opportunities as possible to find successful treatments. That’s why, thanks to our supporters, Epilepsy Research UK has invested more than £4 million into research to develop new treatments.
One researcher to recently benefit from some of this funding is Dr Gareth Morris, Epilepsy Research UK’s 2021 Emerging Leader Fellow. Gareth is developing an innovative gene therapy based upon molecules in cells called microRNAs. He hopes to create a smart treatment which detects changes in these microRNAs before seizures and, like a ‘genetic switch’, turns on the treatment at precisely the right time to prevent them. In his blog later this month, Gareth explains how his research came about and what difference it could make for people with epilepsy.
If anti-epileptic drugs don’t work, other options include surgery, which may either remove parts of the brain causing seizures or put in implants which stimulate the brain with electrical signals. Both can be life-changing, but both can also carry some risks.
For Sophie, when it came to considering surgery to control her epilepsy, her odds weren’t great. She says “Multiple surgeons [said] I would probably be paralysed on the right-hand side of my body.”
But Sophie had an opportunity to try something that would change those odds. She took part in a clinical trial, partly funded by Epilepsy Research UK, of a new treatment, developed by Dr Antonio Valentin, called cortical electrical stimulation. It involves placing electrodes on the surface of the brain beneath the skull, to pinpoint the part of the brain causing epilepsy, and try to reduce the seizures arising from that region.
“Dr Valentin’s research was life-changing,” Sophie says. “The team was so caring and put me in front of their day-to day lives for over two weeks in order to carry out their trial… I wouldn’t change taking part for the world.”
Next week on the Research Blog, Sophie tells us what happened next, and the difference taking part in research has made for her and her epilepsy.
People with epilepsy like Sophie and researchers like Richard and Gareth face different struggles. But they’re united in the same search for new options and a chance at a life free from epilepsy. That’s why Epilepsy Research UK continues to invest in research to accelerate innovations in treatments for everyone with the condition.
Sophie feels there’s so much promise in the research happening today and has a simple message for people recently diagnosed: “Whilst epilepsy can feel so scary and daunting, it’s not a life sentence,” she says. “There is so much that is yet to be known about epilepsy, so don’t give up hope.”
Keep an eye on the Research Blog throughout April, where you’ll hear more from Sophie about her treatment, and learn more about Richard and Gareth’s work developing new epilepsy therapies.