FND Awareness Day UK | 25th March 2023 | Rosey’s Story

Hey my name is Rosey and I am currently 17 years old and I was officially diagnosed withFND 3 years ago.

It all started when I was in school where I would have multiple fainting spells daily with no reason why. I was up A&E multiple times with concussions and bangs to my head, but ultimately I was brushed off without any answers as it was not a big concern to them at the time.

But fast forward about 2 years I began to feel funny in school, so I asked if I could leave the room as I felt like I was going to faint. But it was way worse than a faint. I sat on the floor and in a matter of 10 minutes I woke up with my medical team telling me I had a seizure.

I was so scared. but it didn’t stop there, and that night I had up to 20 seizures meaning they had to give me emergency medication in the hospital. I was kept in hospital for 15 days after that to do further testing, and finally came out with the FND diagnosis. During my stay at hospital I was having seizures every day, lasting between 1-30mins, but as soon as they gave me a diagnosis they referred me to a few websites such as FND Action, which helped a lot as the doctors did not explain this disorder to me properly.

Since the diagnosis I thought my life would be easier as I had a label, and I would be taken seriously by doctors, but boy was I wrong. Every time I went into A&E a doctor would say that I was a waste of time, or that it was all fake.

Who would fake such a debilitating disorder?

Recently I got to seen my neurologist who kept saying to me to breathe and everything will calm down. Well she was in for a surprise when I went to my annual review with them. I told them how may seizures and symptoms have progressed, and now they decided to run further tests, such as a week long epilepsy test, as they never caught a seizure on an EEG before and to an FND specialist unit.

So this is my story so far. Hope you enjoyed it would love to hear all of yours.

Just remember you are not alone.

Written by Rosey