“Should I tell my young child that he/she was diagnosed with Friedreich’s ataxia?” Though solemn and heartbreaking, that question is not uncommon. At least three times a year, it’s asked in FA forums and online groups, and debate follows. It reminds me of my own childhood diagnosis of…
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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Living with Friedreich’s ataxia (FA) means I’ve learned to expect the unexpected. Sometimes when everything seems lined up just right, something completely out of my control will change the script. This week, that something was a spider bite. It started small, a mark on my arm I noticed when…
Making free “lemonade” at a restaurant is popular with penny-pinching college students, even though it may be legally dubious. Or maybe it’s popular because it’s dubious. Here’s how it works: Step one: Order a glass of water with lemon slices. Step two: Mix the water, lemons, and a few packets…
As I was getting ready for breakfast a few mornings ago and listening to a shuffle of random songs, I recognized one that I hadn’t heard in years: “No Hard Feelings” by The Avett Brothers. For the first time in quite a while, the opening ran…
Last week, a college buddy of mine, Max Harrington, filled in as my caregiver so that I could take a memorable trip to New York City. We were there to attend the annual MM+M Awards, which honor achievements in healthcare marketing and communications. I was joined by several…
Dear M&M’s, As a longtime fan of your candy, I want to say thank you. Your candy-coated chocolates have been a positive memory for me since before I could walk. The memory of my grandfather is forever tied to M&M’s because he gave me a brown bag of…
I read the headline on social media and shrugged: “Queen Elizabeth II, Britain’s Steadfast Monarch, Dies.” My Thursday continued mostly unaffected. I normally don’t pay much attention to the British royal family, but in the past few days, I haven’t stopped thinking about the queen’s passing. Perhaps writing about…
“So I guess the old saying ‘everything happens for a reason’ is true,” my friend and supervisor Brittany Foster said, ending her presentation. I’m still thinking about her words a month later, as I noted in my last column. We were in the middle of a “culture meeting” with…
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 will be all right. Sometimes, we desperately need to hear this…
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 the sunset and the bayou mosquitoes chased us indoors. When that…
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 a previous column, I needed updated results to participate 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 to a close, students are about to make a big transition:…
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 barreled toward a future written long ago. My belief in destiny…
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