Hayden Howard, who lives in Ohio, was diagnosed with Friedreich’s ataxia (FA) in 2014 at the age of 11. Using her experience with clinical trials, she says emotional well-being should be weighed into whether a nonessential treatment is worth adhering to, or if it’s better to find another option.
Transcript
There’s been a few trials, for example, where I’ve had to take shots for months, if not years at a time, and that’s very overwhelming. It’s just — it’s not fun to do just because they say, like, “Oh, in my health, wouldn’t you want to do this — it’ll help you.”
That’s not being helpful and not supportive, because it does take an emotional toll on you, as well as a physical one, when it comes to doing these trials. It can be exhausting, physically and mentally.
So I would just say to try and remain calm and think about what you would want to do, and really weigh all of your decisions. There’s been a few trials that I’ve just not participated in. Now, they might have helped me, but just because of what they are and what it would do to me, I would just rather remain calm.
