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.
“This is your life, are you who you want to be?” the band Switchfoot crooned from my speaker as I put on a random morning playlist last week. Even though I’d heard this song, “This Is Your Life,” hundreds…
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In a conversation with a friend, she said, “I guess everything happens for a reason.” Hearing this really bothered me, even though that phrase is pretty ubiquitous; I’ve heard it repeatedly. Behind the phrase is the message that everything…
About five years ago, I packed about three DVDs before my buddy and I left for a weekend at a fishing camp. We didn’t plan on watching many movies, I just brought them in case we got bored after…
I eagerly kept refreshing my inbox. My local doctor’s office had called about 20 minutes earlier, letting me know that it had received my genetic test results and would forward them to me via email. As I wrote in…
I wrote this speech last week for a group of middle-schoolers. I like the topic and think it is relevant for people like me, decades past the age of junior high students. Now that the school year is coming…
When I was younger, I believed in destiny wholeheartedly — that my life unfolded with very little input from me. I was just a passenger on the journey of my life, so no matter what I did, I still…
Somewhere, it’s like a whistle has been blown urging me to get off of the sidelines and into the game. Finding a treatment for my rare disorder is a lot like a professional football game. Crazy metaphor, I know.
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…
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…
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…
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…
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…
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…
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