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.
Living with Friedreich’s ataxia (FA) involves daily challenges that often go unnoticed by others. Coordination, balance, and speech impairments may be brushed off as simple clumsiness, but the consequences can be more than…
Read more
I really enjoy the times when I can almost forget about the constant degeneration of my body due to Friedreich’s ataxia (FA). But every so often, I fall out of my wheelchair, notice that my speech is especially muddled, or face another stark reminder I can’t ignore: that my FA symptoms are worsening.
I’ve never thought of myself as especially strong, or as someone who could identify with a warrior’s personality. Because I face the progressively debilitating disorder Friedreich’s ataxia, I sadly realized that my…
“I never thought I’d see this,” I thought, looking at the surreal scene outside my van’s window. Snow-covered yards and roofs on familiar houses in my hometown were remarkable to me, although…
One and one always equals two, at least that’s how most people see it. Sometimes simple, concrete facts are comforting, especially for people diagnosed with progressive diseases, where we can’t trust our own abilities…
“You need to go easier on yourself,” my friend told me. I was busy berating myself for having a bad week when my symptoms of Friedreich’s ataxia (FA) seemed to spike all…
Living with a rare disease isn’t as simple as I thought it would be. I’ve been thinking about this lately, because on Feb. 28, the world will celebrate Rare Disease Day,…
“If you don’t know where you’re going, you might not get there,” reads the first line of a book on my kitchen table. My bosses mailed the book, “…
I always took pride in being alone, and I still do, to some extent. That makes letting go of being alone, even just a little bit, feel so strange. What…
My arms couldn’t hold my body up in a crawling position any longer, so I face-planted on the matted floor in defeat, yet with a small, self-satisfied smile. As I lay collapsed…
Sticking to a New Year’s resolution may better our lives in the short-term, but thinking about what I will be remembered for matters more to me. So, instead of committing to a…
Despite whatever successes we saw in 2020, the year mostly will be remembered for a pandemic that affected almost everyone on the planet. Though the death, financial hardships, joblessness, and isolation due…
I couldn’t take another step. My forehead was covered in sweat underneath my dark brown bangs. I was miserable from the top of my head down to my aching legs. …
Get regular updates to your inbox.
