Rare Disease Day recognition gives me hope on my journey with FA
Columnist Sean Baumstark is encouraged by efforts to raise awareness
Before I was diagnosed with Friedreich’s ataxia (FA), I knew little about disabilities and nothing about rare diseases. I grew up seeing an accessible parking placard in every car my dad owned, but his disability was due to a gunshot wound he sustained while on the front lines of the Vietnam War. Bullet fragments affected one side of his nervous system, which caused him to walk with a slight limp and limited his ability to run. However, his disability was hard, if not impossible, to notice in a picture or during a conversation with him while seated at a table.
For me, his disability was minor, and knowing his challenges were caused by an injury, I didn’t spend much energy familiarizing myself with the myriad of things that affect people with disabilities.
Of course, that’s much different today. After being told that FA would slowly destroy my abilities, I got a crash course on disability, sometimes learning out of curiosity but primarily out of necessity. Unfortunately, much of what I’ve learned has been about what not to do.
For instance, 10 years ago, I had no problem walking and texting or making a phone call simultaneously. Today, I won’t even think about trying to do anything while walking because of the immense focus required to avoid falling.
I face uphill challenges every day, and FA comes with many frustrating nuances that slow me down and can quickly derail my positivity. However, I find a great deal of hope in seeing others advocate for rare disease patients and overall accessibility.
That’s why I’m incredibly encouraged by Rare Disease Day. Increased awareness gives me hope for all of us in the global rare disease community.
Raising awareness of rare
Over the past few weeks, I’ve enjoyed seeing social media posts related to Rare Disease Day and the different ways people observe and honor our community. Just last week, I saw photos of a friend and fellow FAer, Mary Nadon Scott, on the Friedreich’s Ataxia Research Alliance’s Instagram. I’ve admired Mary for years, and seeing her pictured with the governor of Vermont as he signed an executive proclamation recognizing Feb. 28 as Rare Disease Day in his state was equivalent to a boost of nitrous oxide in any “Fast and Furious” movie.
I don’t live in Vermont, but I’m proud, and my hope is encouraged whenever I read about happenings like that. I’ve seen photos of city buildings and landmarks lit up in honor of Rare Disease Day, and there seems to be no shortage of zebra-inspired filters and wearable accessories.
Some people recognize February as Rare Disease Month and spend a lot of energy raising awareness and advocating as they see fit. Whether you’ve been observing all month or just today, I hope you’ve found encouragement in the progress being made across the globe for the rare disease community.
Although we don’t have a cure yet and I’d never wish to have FA, I’m proud to be a member of the rare disease community.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.