A Rare Disease Day Reflection: We Aren’t Just Inspirational Tiny Tims
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,…
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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Overcoming our Kafkaesque nightmare with a ‘MetamorFAsis’
I tend to find messages of hope and resilience in bleak stories. Take, for instance, my column about finding hope in the objectively depressing movie “Requiem for a Dream.” Similarly, another unlikely source…
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I’m Learning to Set Measurable Goals and Plan for the Future
“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, “…
The Beauty of Being Alone, and Why It’s Not for Me Anymore
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…
Crawling Toward Fitness as My Abilities Change
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…
Remembering Keith Andrus, Who Left His Mark on the FA Community
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…
COVID-19 Vaccines Bring Relief for Many, Envy for Some
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…
The Tale of the ‘Death March’ and the Secret We Kept
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. …
My Diagnosis Isn’t the Entirety of Who I Am
An old tree once stood beside a creek far behind my childhood home. It wasn’t on my family’s property, but because wild blackberries grew there, I was willing to trespass to get to the…
Disability, Independence, and Egrets
I was thinking of egrets as I landed uncomfortably on the floor after my wheelchair brake betrayed me. Well, it wasn’t really a betrayal, but rather my own fault for kicking the brake as…
Strengthening Our Wings
Knowing when to accept help and when not to is a regular challenge for those of us with progressive diseases. “Do you want me to push you down the hall…
Fearless Hearts and a Phoenix Tattoo
A large, old oak tree used to grow outside my bedroom window. A few weeks ago, it fell during the bluster of Hurricane Delta. The tree crashed down while I was less than 20…
How Progress Is Measured
I intentionally fell off the treatment table. A metallic taste filled my mouth as I thudded onto the matted floor with a crash, looking less like a superhero…
