Hayden Howard, who lives in Ohio, was diagnosed with Friedreich’s ataxia (FA) in 2014 at the age of 11. She shares the importance of humility when discussing FA treatment strategies.
Transcript
Just because we have this disease doesn’t mean we know everything about it. And that we’re not always up to date with the current research, the current like, medical drugs and what not – trials.
So I would say, just definitely let them know what you do and don’t understand and have them explain it and break it down a little bit into terms that are more easily understand to people that don’t know.
Because I got diagnosed, but I didn’t really fully understand what FA was until I was 20. You know, I’m 22 now, so I’m still a little bit new with this, when it comes to advocating for myself.
