The strength of today’s FA community is a result of hard work and progress
When I was diagnosed in 1981, there were no resources for people with FA
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I recently watched a video that showed people dancing, hugging, and laughing together, their sense of community shining through. The video, which was shared on Friedreich’s Ataxia News‘ YouTube account from April’s Annual Ataxia Conference, filled me with both envy and pride.
When I was diagnosed with Friedreich’s ataxia (FA), at the age of 19, in 1981, medical professionals told my parents and me there was nothing I could do but take care of myself. I had no access to resources like the National Ataxia Foundation (NAF), which sponsored this year’s conference in Orlando, Florida.
My family felt very isolated and scared, like we were on the top of Mount Everest, yelling for help, our words just blowing back onto us. No one around us knew about the disease, let alone anyone with it. We thought no one could understand what we were going through.
NAF was founded in 1957, but no one connected us with it. I didn’t know the FA community existed, and even if I had known, there was no easy way to link up with it. There was no internet to find information about NAF or FA, and no social media to connect with what are now 15,000 people worldwide with FA. The Friedreich’s Ataxia Research Alliance (FARA), a patient organization I am active in, wasn’t founded until 1998.
Strength and pride
I wish the community now readily available to newly diagnosed patients had been there for my family and me back in 1981. Because we had been so lonely, seeing that video from the conference made me envious. However, I am so glad that people have a community now and can access it, so they don’t have to struggle like my family and I did.
And I take great pride in knowing that I helped create the FA community we have today. Many of us did, because community is created by all of us.
Whenever I get the chance, I join members of the community in person. I am not very good at participating in the online community, but I recognize its great value. Being surrounded by friends and members of the FA community puts me in a happy place. It feels just like that short video looks: joyful and comfortable.
Envy can still eat at me a little, though. When it does, I remember that my friends and I, and everyone at FARA and NAF, worked hard to create this community, and that we should be proud of that accomplishment. It should fill us up. With our eyes on the future, we are working to build an even better FA 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.
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