My name is Tiffany; I am 33 years old and live in Massachusetts. I have a muscle condition called Friedreich’s Ataxia (FA); I was diagnosed at 15, first with Cardiomyopathy (a heart disease), that narrowed it down. There is no cure for FA or even a treatment as of 2022. **Update-May 2023, there is finally a treatment, but I am not sure if insurance will cover this new drug with a 6 figure monthly bill.**Try hearing that at 15. Basically, it is shutting down all my muscles except the brain. When I was 19 I got a walker and a year later I got my first wheelchair and right now I’m ordering my first power wheelchair.  

I have glasses because FA affects my eyesight, but I buy new frames a lot. But when I try to focus on small letters my eyeballs shake, like I can’t read subtitles on a movie screen. One day they will have headphones to read subtitles. 

It also affects my hearing, especially in crowds, it’s like I can't differentiate between background noises, I become a bobble head, smiling and nodding on repeat.

Then there is my speech, which is slow and slurred. This makes people think I am mentally challenged when I am not. My speech is my biggest insecurity. Communication is key, they say.

I work out with a trainer to keep my arm strength. (No Popeye here though)

Throughout this blog I will speak of FA, the good, the bad and the ugly.