Christina Cordaro, who lives in Pennsylvania, was diagnosed with Friedreich’s ataxia (FA) in 2011 at the age of 21. She shares how being firm about your needs during treatment strategy discussions is essential to finding a plan that fits more realistically into your lifestyle.
Transcript
My advice would be: Don’t be afraid to use your voice and stand up for yourself. And putting your needs first.
We’re the ones with a disease and live with this every day. We know our bodies best and what we need.
So it’s just important to have a voice for yourself in the community.
I personally haven’t had experiences, but I know people in the community, if they have younger children, or want answers, because I know treatments may be only approved for older adults. So having parents of children with FA just being heard and making sure they’re important, I guess.