Story
“The most common condition you’ve never heard of.”
This was the phrase that was used by a consultant who had been asked to come and examine my daughter in May of last year. She had been brought into accident & emergency for the third time in four weeks in a coma.
My daughter, Anya, had had many assessments and scans in those horrible and exhausting weeks and the consensus was that there was nothing wrong with the hardware however, was the software working correctly?
She was diagnosed with Functional Neurological Disorder.
The symptoms are wide ranging and Anya, along with others who are diagnosed, lives with many of the following:
Weakness/paralysis, tremors, tics, spasms jerks, gait problems, balance issues, fixed postures, numbness, tingling, electric shock sensations, hypersensitivity to light/sound, slurred speech, difficulty speaking stuttering, swallowing issues,
memory problems, concentration issues, "brain fog," word-finding difficulties, dissociation, dizziness and chronic pain, extreme fatigue, sleep disturbances, anxiety, depression.
This is compounded by a lack of recognition/understanding of the disorder even in medical professions that makes things even more difficult and clinical pathways harder to find.
On the 26th of April 2026 I will be running the London marathon. I have decided to do this to raise money for FND Action. This is a charitable organisation that raises awareness of functional neurological disorders.
Due to the lack of understanding of the disorder from a public and a medical professional point of view, coupled with a lack of guidance and treatment pathways, this highlights the importance of why I am running for this charity to help shed light on a hidden but misunderstood disorder.
It’s a condition that is being seen and diagnosed more frequently, with FND Action playing a really important part in research and support.
I have never run a marathon before. I’ve done a few 10k runs, usually after a swim and cycle to complete triathlons. My last triathlon was completed with my daughter a few years ago. Full disclosure: I have completed the Ride 100 (miles) London cycle sportive and the London Swim Serpentine so this will complete the set.
Thank you for taking the time to read. As I’ve started talking about this condition with colleagues, friends and people I’ve met, the number of people who know of someone who has it or who have been affected by this is so much higher than I could have ever imagined.
If you’d like to know more, please follow this link.
If you’d like to donate, thank you.
Once again, thank you.
Anya is the strongest person I know and I’m proud run in her name.
Dave.