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Of all my FA symptoms, I despise fatigue the most

Today, as I do most days, I woke up still tired. My sleep last night wasn’t great, but that’s not why I’m tired. I’m exhausted because I have Friedreich’s ataxia (FA). I tell myself I’m tired, and then the self-help book reader in me says, “Tell yourself you’re energized.”…

Congress must reauthorize the priority review voucher program

During the final hours of the 2019 Friedreich’s Ataxia Symposium in Pennsylvania, the Friedreich’s Ataxia Research Alliance announced that the pharmaceutical company Reata had achieved statistically significant positive results in its Phase 2 trial of omaveloxolone (also known as “omav” at the time and now sold under the brand…

We all should advocate for our healthcare rights

Last week, I had my annual echocardiogram, known informally as an echo. My doctors want to keep an eye on my heart function because I have Friedreich’s ataxia (FA), and one of its more serious symptoms is cardiomyopathy. Monitoring my heart is crucial to detecting any changes early and…

Back-to-school season mirrors big changes in my life with FA

Mid-August is generally recognized as back-to-school time for those with school-age children or who work in education. Our television programs are flooded with commercials for the latest and greatest in children’s fashion trends and the new must-have school supplies; our inboxes are full of promotions and sales; and there’s a…

Ways to cope when life with FA involves post-traumatic stress

The other day I was listening to a podcast. (I think I’m addicted to podcasts.) The interviewee had post-traumatic stress disorder (PTSD), though she preferred that it be called post-traumatic stress injury (PTSI) because she felt she was having a normal reaction to a horrendous trauma. During my years with…