I was diagnosed with Friedreich’s Ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 47.
I feel that being more open about my diagnosis and disability has strengthened my friendships. For a while, I avoided certain things because I felt I had to keep up a pretence. For example, even when meeting someone in a coffee shop, I would worry about carrying the tray. Now I can be much more open about my limitations and ask a kind employee to carry it over to my seat. People are so helpful.
As a result, I can be more social and not withdraw so much.
My friends are amazing. I’m on the board of the charity FARA Ireland, and I also keep up to date with all the fantastic work that Ataxia UK is doing for the FA community. My friends have really rallied since my diagnosis and wanted to do something to help raise funds. They are organising a gala ball in Belfast next month to fundraise for FARA Ireland. What started as a small dinner is now an event for 200 people! It has also connected me with other people with FA in Northern Ireland.
I am very nervous about the event, but also excited. It is shaping up to be a great night, thanks to my fabulous friends!
