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“Weren’t you just in a wheelchair? Why are you using a walker now? Are you getting better? If you can walk, why do you even have a wheelchair?” I love when genuinely curious people ask me questions. With multiple assistive devices and an invisible illness, I have learned…

Rare Disease Day was observed on Feb. 28. However, we don’t have to limit our advocacy to a single day. Every day is an opportunity to use our voices to raise awareness and educate those who may be unfamiliar with the rare disease and Friedreich’s ataxia communities.

I’ve always been fascinated by stories featuring people who confront adversity by fighting against all odds to do extraordinary things. I’ve cried during “Extreme Makeover: Home Edition” or when Ellen DeGeneres has handed a life-changing check to a single parent or a disabled child. I become fascinated with their…

I’ve been down this road before and it doesn’t end up anywhere good. Following that thought, I swallowed the pill laid out for me and rushed to the bathroom to finish getting ready for school. As a teenager, I was pretty ambivalent.

People around the world observed Rare Disease Day on Thursday, which gives patients, caregivers, and advocates the opportunity to share their experiences and raise awareness of the more than 7,000 known rare diseases. Rare Disease Day is organized here in the U.S. by the National Organization for Rare Disorders…

One of the scariest life changes a patient anticipates upon receiving a diagnosis of Friedreich’s ataxia is the use of a walking aid. For me, the thought of needing a device to get around in my day-to-day activities was soul crushing. I thought that it signified the…

The theater was packed. It was unseasonably warm for February in Washington, D.C., and my Cajun blood was thankful. The details of that Sunday night in 2018 may have blurred in my memory, but the overall message from that week has stayed with me.

In a given week, a full-time employee can work five days and 40 hours or more. With all of these hours, it can feel as though a workplace has become a second home. Pursuing a career that requires at least 40 hours a week can take a toll on…

I may not like my body, but I respect it. I often find myself explaining what I mean when I say “I hate my body.” So many people the world over say that all the time. We all have something. You might wish you were taller, that your nose…

I find it easy to identify myself as a person with Friedreich’s ataxia (FA). In light of the significant effects that FA has on my life, I have no problem acknowledging myself as “Matt Lafleur, a guy with FA.” Full stop. But as I get…

To parents with newly diagnosed children and those who have been in this fight for a while: I salute you. As an adult patient, I am not coming from a place of complete understanding because I do not have a child with FA. However, I do…

When diagnosed with Friedreich’s ataxia, the first things people usually ask are: “What can I do about this? Is there a treatment or cure? Where do I sign up?” Then, we receive more bad news: Currently, there is no treatment or cure. But there is a ray of…