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 live in Belfast, Northern Ireland, so I now have to wait for the UK decision on Skyclarys. Yesterday was a great day for people living with FA in Ireland, as the HSE agreed to reimburse Skyclarys for adults with FA!
Skyclarys is by no means a cure, but it is the first approved treatment shown to slow the progression of FA by up to 55%.
Personally, for me, because I have late-onset FA, access to this treatment could mean continuing to be mobile, continuing to drive, working a full-time office job, and living independently. So, it is a huge deal for me.
Yesterday was therefore a bit bittersweet. I am absolutely delighted for those living in the south of Ireland, and the decision gives us all hope. I just hope that the UK and other countries can come through too!
