Two years ago, at the age of 44, I was diagnosed with a rare condition called Friedreich’s Ataxia (FA).
I had balance and speech symptoms for a few years and because 4 out of 5 of my dad’s siblings had FA (although he didn’t), I began to wonder ‘Could it be..?’
Although most people with FA get diagnosed at a young age, my dad’s siblings were older too, so that made me think that it could be a possibility. It was quite strange, but I was still quite surprised when it was formally diagnosed through genetic testing!
Late onset FA is a strange mix of feeling sad about the diagnosis and worrying about the future, and feeling happy that I had such a great life with no limitations until now. You nearly feel a little guilty! I was very sporty when I was younger and had a great social life. My life has definitely become smaller. I used to attend a lot of concerts and now it is much more of an ordeal – I would get anxious about it rather than really looking forward to it. Thankfully I am still walking (just about!), but I cannot use stairs without a banister, and I can’t walk downhill. So I have to look at all these accessibility factors when booking tickets for a concert. Thankfully I can still really enjoy the music!
BUT…… I am very positive! I know there is so much research being done into Friedreich’s ataxia and other neurological conditions. So I am very hopeful that the lives of people with FA and other ataxias will be changed for the better!
Clare will be sharing more about her experiences of living with late onset FA in upcoming blogs, so stay tuned!
