“When I got my diagnosis I could have thrown a party,” says Sophie Davis who is managing the symptoms of functional neurological disorder
A young East Yorkshire woman who suffers seizures and even paralysis wants to shine a spotlight on the little-known medical condition that is blighting her life. Sophie Davis, 22, has described the frustration of living with functional neurological disorder (FND) which impacts the normal pathways of the brain and can cause blackouts, tremors and stammering among a host of symptoms.
The Beverley woman says clinicians and even some neurological doctors lack understanding of the condition – leading to a “rocky” experience since her own diagnosis last year. It comes after years of non-epileptic seizures which can vary from “absence seizures” – which can look like Sophie is zoned out of the conversation – through to “drop attacks” where she suddenly falls unconscious, with no memory of what has happened.
Sophie explained: “It affects people differently. But it’s basically a condition where your brain and your organs don’t communicate properly with each other. It ends up with sort of ‘misfires’.
“It’s a bit like having a computer where the hard drive is perfectly fine but the software isn’t working. That’s the way it was explained to me when I was diagnosed.”
Sophie’s own journey with FND began some years ago following a fall down stairs when she suddenly blacked out. Clinicians told her she should have been diagnosed at that point but – as is the case with many FND sufferers – it can take time for the condition to be identified.
She has spent time in hospital – including a six week stint in which she had to learn how to walk again following a bout of paralysis. And the disorder is impacting her own ambitions to become a paediatric nurse.
Sophie said: “When I got my diagnosis I could have thrown a party – it felt like the happiest day of my life. Even though I’d gone through a lot with people who weren’t very kind, it felt like I’d finally got somewhere.
“I could finally read up on what to do. I’d even been to the GP and he’d told me I didn’t have FND, just non-epileptic seizures – that was two weeks before I was diagnosed and when I was diagnosed he actually rang me to apologise. I know the NHS is stretched but with what I was going through, I just wanted someone to listen.”
Medical experts know relatively little about FND and what causes it, though it has been suggested that periods of stress and grief could contribute to it. In Sophie’s case, there was no obvious trigger, which made her diagnosis even harder.
Getting treatment has proved difficult as she says doctors often misunderstand the physical impacts of the condition. She has become frustrated with suggestions that therapy alone will help.
“Just because it’s a condition that doesn’t get diagnosed very much doesn’t mean I don’t want to be treated like a human being,” Sophie added. “I’ve spoken to quite a few people with FND and each of us have had bad experiences.”
Sophie was last at college in 2022 and says a normal day job is not possible due to her frequent blackouts. However, her experiences in the health service have made her more determined to pursue a nursing career, with the hope she can offer more respect to patients.