I’m no cartographer, but the adventurous part of me has always awakened when I hear about the saying supposedly inscribed on ancient maps: “Here be dragons.” Even though historians now believe that the phrase was only used on a single 16th-century globe, the rumor that most medieval maps warned…
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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Sometimes when I think my own little victory is simply about existing, I imagine myself answering questions that my 14-year-old self would’ve loved to have asked if he could see me now. I’m talking about the kid who was just beginning to understand Friedreich’s ataxia (FA) after reading about…
Note: This column describes the author’s and interviewee’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Hope is crucial for those in the Friedreich’s ataxia (FA) community. For me, facing a rare degenerative…
The word “enduring” has been on my mind a lot lately. I was thinking about that concept as I saw friends with Friedreich’s ataxia (FA) post on social media about the approval of Skyclarys (omaveloxolone), the first-ever treatment for our disorder. Even though it’s worth celebrating…
The recent approval of Skyclarys (omaveloxolone), the first treatment for Friedreich’s ataxia (FA), is game-changing. But I’m frustrated that there’s still a long journey ahead for me. When this drug was approved Feb. 28, I celebrated in a column posted minutes after the announcement. A few…
From its start, this column has mostly focused on my own reflections and experiences with Friedreich’s ataxia (FA). Although firsthand perspectives are important, navigating a condition like FA isn’t a solitary effort. That’s why I’ve been asking my immediate family members to share their thoughts. My columns have…
As I sat in the darkened movie theater recently, the screen showed a colossal battle filled with too much reliance on CGI. I yawned and checked my watch. Not even halfway into the movie’s run time and I was already losing interest. I was surprised that the scene bored me…
Melodramatic title aside, Tuesday, Feb. 28, was a nail-biter. The U.S. Food and Drug Administration (FDA) was expected to make a decision regarding the approval of Skyclarys (omaveloxolone) for my rare disease, Friedreich’s ataxia (FA). A long and bumpy road had led to this decision, and the…
As of today, the status of Friedreich’s ataxia (FA) has changed from untreatable to treatable, thanks to the approval of Skyclarys (omaveloxolone) by the U.S. Food and Drug Administration (FDA). I still find it unbelievable that FA has a treatment. I’m reminded of high school, when one…
I’m realizing that a Friedriech’s ataxia (FA) diagnosis is a family affair, and the stories I tell in my column, “Little Victories,” typically offer only one perspective. I tried to broaden that view when my sister Kiki shared her perspective in my column last month. She is…
As the audience gathered last week, again I asked, “Why am I doing this?” They sprawled comfortably on couches and beanbags as they waited on the slightly uncomfortable speaker: me. My friend Loren had asked me to speak to the students at his nonprofit, Hope for Opelousas, a…
Poetry has always been pivotal, even crucial, to my life’s journey. Maybe that’s fitting for a guy diagnosed with a rare disease. In one survey from 2017, only about 12% of adults reported reading poetry in the last year. My disorder, Friedreich’s ataxia (FA), affects 1…
What’s it like to be the only sibling out of three who doesn’t have a rare diagnosis? As I fumble my way through living with Friedreich’s ataxia (FA), I want to know what life looks like to my able-bodied sibling — my youngest sister, Mckenzie, who went by Kiki…
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