Liam Kruesi, who lives in Manalapan, New Jersey, was diagnosed with Friedreich’s ataxia (FA) in 2014. He shares a powerful reminder about the need to do your research on FA treatments, and why care strategies aren’t always as straightforward as they seem.
Transcript
I would say, first and foremost, if you are looking to start a new treatment, the most important thing is full research. Fully understanding what the treatment does, fully understanding what the treatment does not do, and fully understanding what the treatment method would best look like for you.
There are certain treatments that would open up, in particular, antioxidant pathways within the cell. And in FA that makes a lot of sense. But sometimes, one thing they consider when weighing going on — some of them would open up an antioxidant pathway — is our cells themselves don’t contribute that much energy.
So sometimes when a particular pathway is opened up, that could add to the energy deficiency. Because to keep that opened and to keep that functioning, your cells are going to need to produce a lot more energy than they just aren’t.
So you have to keep that in mind, because you don’t want a dramatic increase in your tiredness or fatigue level.
To combat this, I think that you truly need to add extra components. And you can’t just abandon one thing. You can’t just throw the baby out with the bathwater. It’s sort of like you have braces.
Well, now you just don’t brush your teeth because your teeth are being better with the braces. It’s like, that’s not totally what braces do. You want to implement both things for the best outcome on your teeth. And it’s the same way with treatment with FA.
