Liam Kruesi, who lives in Manalapan, New Jersey, was diagnosed with Friedreich’s ataxia (FA) in 2014. He explains how strong community ties and a more open mindset can make a real difference when managing FA and its treatments.
Transcript
We have such a good pipeline and such a good community around it. I can’t take too much away from the community around FA. I love it.
The major thing I feel like is the most unhelpful is overly rigid thinking — where you’re only looking at this as changing your FXN gene, and it’s reaching the brain, and only good things.
As a caveat on top of that, I need you to explain to me supplements to this treatment.
On top of taking the treatment, I mean, inevitably it’s going to make me more tired over time. I need you to address that and suggest things as supplements to that. There should not be just an acceptance of side effects.
