Epilepsy Society

It was an epilepsy colony, a place where people with epilepsy had the support and space to live and work, But on the other hand, they were kept separate from wider society.

Today, it's the headquarters of the Epilepsy Society, the UK's leading charity for epilepsy research and support.

And in what's now a peaceful, flower-filled garden, I sat down with Andre Main, who oversees the charity's helpline and used to pick up the phones herself.

So there's 630,000 people living with epilepsy in the UK.

He told me he thinks of epilepsy as an iceberg.

It's everything that is underneath it that is probably the day-to-day, such as brain fog, anxiety being a big one as well, not knowing if having a headache is actually just a headache or is it actually a warning signal that you're not feeling right and something else could be happening.

Andre from the Epilepsy Society has spent years hearing firsthand what it's like to live with epilepsy today.

So I had one last question for her.

Today, I'm talking to Dr. Fergus Rugg-Gunn.

Fergus is the Clinical Lead at Epilepsy Society's Chalfont Centre in Buckinghamshire and the Educational Lead for the Epilepsy Department at UCLH National Hospital for Neurology and Neurosurgery.

Welcome to the podcast, Fergus.

Thank you very much for inviting me.

And then having really a broad understanding of the teratogenicity data, or at least the discussions that should take place

around some of the drugs like valprate and tapiramide.

The Epilepsy Society, I work closely with them.

There's an enormous amount of resources available, both for patients and medical professionals on their website.

Yeah

"In June 2024, Deeley was criticized by the Epilepsy Society about her appearance on This Morning for making a joke about having a seizure on the show"

Oh.

[laughs] Oh, dear