Writing a children’s book about FA, now soon to be published

main graphic for column titled Why did I write a children’s book? I’m not sure, but I know firsthand that being diagnosed with a rare disease is profoundly isolating. Because I didn’t feel I could voice that at the time, my book will now speak for me, helping others who might feel isolated, too. At age 9, when I learned I had Friedreich’s ataxia (FA), I wasn’t prepared for its unusual symptoms . My abilities, compared with those of my classmates, cousins, and almost every other kid I knew, seemed to be fading at a time when they should’ve been developing. Though my younger sister was diagnosed with FA at the same time, I wasn’t supportive or helpful to her because I was so focused on myself, just maintaining and getting by. Instead of clinging to and confiding in each other for support, I felt I was drowning alone — though she was right there, also trying to cope. The words “Friedreich’s ataxia” and our waxing disabilities were shameful to us and never mentioned. Recommended Reading FA cell therapy PPL-001 granted orphan drug status by FDA Almost 30 years later, I’ve learned that breaking the silence and shame around FA is necessary for a complete and genuine life. I now speak and write openly about the challenges FA brings, as well as my struggle to stop those challenges from defining me. That’s the opposite of how I dealt with things when I was younger, when FA was anathema to even mention. I hope my writings, columns , speaking engagements, and other advocacy work help others feel less isolated, especially those with FA. However, I’ve yet to reach out to a critical subset of people: those who don’t know what “anathema” means. Even though I’m a verbose punk, adult readers will either know the word or get from context clues that it’s something one vehemently dislikes. The readers I’m missing are young people, who probably don’t resonate with my love of psychology, existentialism, words like “anathema,” and all of my advocacy. That work is incomplete if I can’t make a […]

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