Aug. 7 was a big day. Some groundbreaking news came out in the rare disease world: the U.S. Food and Drug Administration approved a new treatment for spinal muscular atrophy (SMA) that will be available to patients soon. What is…
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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A race has ended, and this time, I lost. I want to be honest, even though honesty feels especially heavy right now. I’d hoped to win this race. I really did. I’m deeply disappointed — not the explosive kind that demands attention, but the kind that settles in like fog,…
I’m not patient. Not at all. I think it’s funny that people with debilitating health conditions often are seen as being patient and tolerant. We seem to be superhuman, persistent, and serene in our daily activities, no matter how long they take or how much we…
I remember getting to the pool early one summer morning before swimming lessons began. I wasn’t a swim teacher per se; I was more of a teacher’s assistant. The head instructor had me and the instructors my age do a lifeguard training exercise.
“Well look at that,” the doctor remarked, obviously impressed. The wonder in his voice made me grin a little bit. Any positive physical change with progressive Friedreich’s ataxia is a little victory. I had just swung my legs off the…
My alarm goes off at 6 a.m. I open my eyes to my service dog, Zeego, who still has his eyes closed. He is definitely not ready to get up yet, but I am. With a hand on my SuperPole for balance, I…
Editor’s note: This week’s column is co-authored by Kyle Bryant, founder of rideATAXIA, spokesman for for the Friedreich’s Ataxia Research Alliance, and co-host of the podcast “Two Disabled Dudes.” A few weeks ago, I wrote “I’m Confident rideATAXIA Dallas Will Happen in November,”…
“Forty needles! I think that’s a record over here!” I was lying on my stomach on the adjustable table as my physical therapist said this with a laughable mix of pride and wonder. One of the treatments he uses is dry needling. Neither…
“Look at the mirror on the wall. Can you tell me what letters you see?” I sat there in the darkened optometrist’s office with my face pressed forward into a strange head-shaped contraption. I looked up at the mirror and saw the reflection of a bright…
The clanky metallic sounds are what I remember most. Pap-pap! And then a small sound of straining as someone’s body weight shifts as they are dragged forward. Whenever that sound echoed down the high school hallways, I knew what it…
About a decade ago, I read a local news report about a pizzeria being taken to court because it was inaccessible to people with disabilities. Opened in 1990, this house-turned-business sat directly across the street from my college campus. I read about the…
The original date for this year’s rideATAXIA Dallas was March 28. This would have been my fourth year participating in the event. RideATAXIA is a day of bike treks for three skill levels — 50 miles, 25 miles, and 4…
I’ve been thinking a lot about identity lately. Who am I to myself? To others? Is Friedreich’s ataxia fundamental to who I am? Would I still be me without that rare diagnosis? Maybe I can only…
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