My name is Scott Armit, I’m 30 years old from Glasgow, Scotland. I was diagnosed with a genetic neurological disease called Friedreich’s Ataxia when I was 23.

I noticed something was wrong when I around 21, clumsy things happened at the beginning, tripping up, falling over etc. It got slightly worse until I was going to bars with friends and getting refused service because I was “too drunk”. This happened several times and I hadn’t even had a drink. I felt really embarrassed and it ended up giving me anxiety, so I stopped going out.

By this point, I knew in myself something wasn’t right, so I went to my GP. After months of blood tests, MRI’s, neurological tests and two days before I was to go in for lumbar puncture I got a phone call from my neurologist to go see him instead.

I remember the date, 8th of October, the worst day of my life.

I was in the room with my mum and sister when I got told it was a progressive condition. There was no treatment, no cure and it shortens life expectancy. It mostly affects my balance and coordination and I’d eventually be confined to a wheelchair. I was then given a leaflet explaining Friedreich’s Ataxia in slightly more detail. 

I remember walking out of the hospital. It felt like all my hopes and dreams were shattered and my life was over. All the physical aspects of the disease terrified me at the beginning but it was the mental aspect I really struggled with. When I received my diagnosis initially it sent me into a deep state of depression. I would cancel plans I’d made at the last minute, lie to friends and family that I had plans and couldn’t meet up with them. In reality, though I was hiding away in my bedroom and at my worst even contemplating suicide. 

Fortunately, that’s not the end of my story though! I’m so lucky to have the most amazing friends and family. They never turned their backs on me and supported me through everything and for that, I’ll be forever grateful. With their help, I’ve managed to pick myself up from rock bottom and chose to start fighting back. I joined a gym and got a personal trainer to keep my body as strong as possible. I was also very lucky to get accepted for a yearlong experimental drug trial. This gave me so much hope again! So far it’s been going really well, I feel really good about myself again and I’m happy. I’ve applied to become an ambassador for Ataxia UK recently as well. I’d love to be able to help anyone struggling with anything that I’ve experienced in my life. I feel positive about my future and won’t let my condition defeat me.

On behalf of Ataxia and Me, I would like to thank Scott for sharing his story of the mental health aspect of suffering from a rare condition. Not all symptoms are visible and it’s important to #SpeakUp. I am so happy to see how he has managed to turn his hardships into something so positive for not only himself but the Ataxia community!

If you’d like to know more about Scott be sure to follow him on Twitter @Scott231288.

If you would also like to get involved and share your experience with Ataxia or other rare condition, please get into contact with us through our social media channels below.