Anna's Story

Anna Coe has undergone 27 years of different medications and brain surgery to try to control her epilepsy. She has often felt that the trial and error of different medication changes has led her down dead ends and left her feeling exhausted. But now she feels that a diagnosis through sequencing her DNA is offering her, and her future children, real hope of better, more focussed treatments that will work for her.

Anna Coe with husband Scott

Anna Coe is 36. She was first diagnosed with epilepsy at the age of nine and although she has never let the condition get in the way of her education or employment - she works for a homeless charity in Surrey and was previously a journalist - she describes her life as a constant battle to get her seizures under control.

"I have had 27 years of trial and error with so many different medications, or combinations of medications," she says. "In 2011 I underwent surgery to remove the part of my brain that was causing my seizures - that worked for two and a half years, but then my seizures returned."

Initially Anna experienced complex partial seizures which meant that though she was conscious, she was unaware of where she was or what she was doing - "I often locked myself out of the house", she says.

Since her surgery, her seizures now happen in her sleep and while they don't have the same impact as her previous day time seizures, there have been times when she has had three or four seizures in a night, leaving her worn out in the morning.

Alongside this she has found the constant changing from one medication to another exhausting with little hope of gaining full control of her seizures.

But now, after almost three decades of treatment, Anna is hopeful that her neurologist may have found the cause of her epilepsy and that this could open up new, more focussed treatment options for her.

Anna has had her DNA sequenced as part of the 100k Genomes Project and her neurologist, Professor Sanjay Sisodiya, Professor of Neurology at UCL Queen Square Institute of Neurology and Director of Genomics at Epilepsy Society, is hopeful they may be able to pinpoint the cause of her epilepsy.

"He thinks they may have found a biomarker that could explain why I have epilepsy when no-one else in my family does," continues Anna. "The next step is to test my parents' DNA to see if either of them has the same biomarker. Neither of them has epilepsy so if they have the biomarker, maybe it's not the cause. But if neither of them has it then it could explain my seizures.

"I am just really excited that this could open up new avenues of treatment for me that the doctors are confident should work according to my genetic code. I feel a real sense of hope which I haven't felt in a long time. I feel I have been going down dead ends with medications for so many years now, but suddenly, here is this key piece of extra information that could make such a difference.

"It feels like such a step forward in medicine and it gives me confidence that for future generations - and if I have a family of my own - any child who is diagnosed with epilepsy will not have to go through the endless trials of medications and treatments that I have been through, in the hopes of finding the right one.

"Just to have that genetic blueprint and be able to say, that drug might work for you, is such a major step forward."

To talk about concerns around epilepsy please call the Epilepsy Society helpline on 01494 601 400. 


Read how we are working to understand the genetic architecture of each individual person's epilepsy through our world leading genomics research programme.