Connecting with my FA community sparks joy and hope
I may have a rare disease, but I am not alone
I recently went to Philadelphia for rideATAXIA, a fundraiser bike ride benefiting the Friedreich’s Ataxia Research Alliance (FARA). The event was followed by a symposium focused on summarizing the current research on new treatments and a potential cure for Friedreich’s ataxia (FA), as well as helping us live with the condition.
RideATAXIA involved many amazing people pedaling, cranking (hand cycles), walking, and rolling on a sunny, warm fall day to cure FA. I’ve attended the Philly ride for about 13 years.
I’m always inspired and awed by everyone who cares about finding a cure for FA. This may sound silly. In my head, I hear people thinking, “Of course the folks in attendance want to cure FA. It’s a fundraiser.”
Standing in community
To understand why this event is so joyful for me, I need to tell you where I come from. One of the worst days of my life was when I was diagnosed with FA. Like many patients, I was told there was no treatment or cure, and that I’d be using a wheelchair by age 25 and dead by 35. Then the neurologist had me leave the room and told my parents I’d become an addict.
At 19, I thought my life was just beginning. Fortunately, none of the neurologist’s predictions materialized. As I write this, I am still kicking (maybe rolling in my wheelchair is more accurate) at 62.
As an aside, I know some of my readers have experienced, either personally or with a loved one, significantly steeper degeneration than I have. I appreciate that on the spectrum of FA, my symptoms and progression are relatively mild. This isn’t to say that life with FA isn’t hard for me, but that I know it’s harder for many others.
When I was diagnosed, I’d never heard of Friedreich’s ataxia. My family and I weren’t given resources to help us cope with this devastating diagnosis. Without a connection to any other FA families, we felt alone.
So, fast forward from my 1981 diagnosis to last weekend’s rideATAXIA, and I’m still in awe of all the folks who come out to support a cure for FA. I no longer feel alone!
Additionally, for 41 years I was told “no treatment, no cure.” Today, there is an approved treatment, and researchers are working hard to develop additional therapies. Representatives from at least three pharmaceutical companies, as well as multiple researchers, attended the recent fundraiser.
These developments are a huge leap from 1981, when scientists didn’t even understand what causes FA.
Vital to my ability to cope with this condition is that I stand in community. Every rideATAXIA I attend reminds me of that. Community can be elusive for those of us with rare diseases, but finding our tribe is vital to our mental health.
Today, I am still basking in my rideATAXIA glow. My emotions are all over the place as I reflect on the camaraderie I’ve found. I’m also sad as I think about the amazing people I know who have lost their battle with FA, and all the children who don’t yet have access to treatment. New therapies — and, eventually, a cure — will never come fast enough.
How can I continue to give back to FARA and the FA community, which have both given me so much? I expect that question to bounce ceaselessly around my brain. But I know for sure that it is my great honor to be able to give back.
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.
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