This year is an interesting time for those with Friedreich’s ataxia (FA). There are plenty of reasons to be hopeful for a treatment for FA, more than ever before. Finally, the first treatment seems on the horizon for this damned degenerative disorder. However, it’s important that the FA community be…
Little Victories — Matthew Lafleur
Louisiana native Matthew Lafleur’s life isn’t what he expected following his 1994 diagnosis of Friedreich’s ataxia, a rare and debilitating disorder. Instead of giving up, he obtained degrees in English and mental health counseling. Unable to find a job after grad school, he applied to write a column at Friedreich’s Ataxia News. Years later, he now serves as the Associate Director of Patient Engagement for that site’s parent company, Bionews. Through his column and his role in patient engagement, Matt hopes to elevate the often overlooked voices of the rare disease population. We are not victims. We matter.
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Since writing my last column, I’ve been struggling to find hope after being denied participation in a gene therapy clinical trial. That may seem strange coming from me, since most of my writing over the years has been about the stubborn kind of hope that people living with…
Second of two parts. Read my previous column here. I’ve been telling the same old story about my Friedreich’s ataxia (FA) diagnosis for more than 10 years. Maybe it’s time to rewrite it. Like I wrote in my previous column, the facts of my diagnosis will never change,…
First of two parts. I answered my phone on speaker and set it on my table. I was worried that the call had a bad connection, as I heard only static. I almost hung up when the displaced-Californian voice of my good friend Kyle Bryant gave our usual greeting:…
As the end of February approaches, Rare Disease Day, held annually on the last day of the month, is exciting for most of those who live with a rare disease. But every year, something about this day just doesn’t sit right with me. This year, instead of showcasing the…
Often I’d rather dream than face reality. I reflect on this most mornings, when the sun rises enough to turn the sky pinkish-blue and my eyes flutter open. Typically, I wake up on my left side and have to turn myself over to get out of bed. But turning over…
A few mornings ago, I groggily looked up and saw my reflection in the mirror. Because my vanity is wheelchair-accessible, I can see myself when I’m brushing my teeth and fixing my hair. I see the world through two black holes. My dark brown eyes are almost completely black, so…
“You’re cured, Matt! You’re cured!” yelled some friends, their shouts echoing in the ballroom of my college’s student union almost 15 years ago. I remained sitting in my wheelchair following this Christian service of a popular healing preacher. By then, Friedreich’s ataxia (FA) required me to…
For some reason, the huge tome of American literature that served as my textbook for high school English always opened to the poem, “For the Dead,” by Adrienne Rich. Probably because the page was dead center in that hulking paperback book, that poem…
The long drive back home was uneventful as the sky shifted from a clear blue to an ominous collection of thunderclouds. If it was a metaphor, I was too tired to notice. We drove on. I asked my buddy Ryan, who was driving my van, what his favorite part of…
“This isn’t a good start to the trip,” I thought while trying not to topple to the floor. I’d missed my wheelchair seat while trying to transfer into it. I was at the Lafayette Regional Airport in Louisiana, and the only bathroom beyond the security checkpoint wasn’t even close…
Sometimes holding on to hope looks a lot like desperation. I’ve been dealing with the unstoppable progression of my disorder, Friedreich’s ataxia (FA), for most of my life. Since there is no treatment or cure for FA yet, nothing stops it from ravaging me and sapping my abilities little…
Although I believed that the COVID-19 pandemic was beginning to wane, the delta variant has caused a huge increase in cases. Social distancing and mask mandates are on the rise again, much to my disappointment. The U.S. Food and Drug Administration’s current health guidelines aren’t very different from…
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