I often struggle with two opposing principles of thought: I have a strong animosity toward Friedreich’s ataxia (FA), and I have a deep gratitude for life because of it.
The animosity is easy to understand. Even for those unfamiliar with FA, knowing that it causes progressive damage to one’s body is probably enough for most to admit they wouldn’t want such a diagnosis. That it can be labeled as a disease, and a rare one at that, adds to the unappealing lineup. Even a mild health concern can be scary, frustrating, and life-altering.
I didn’t feel any gratitude in the early days after my diagnosis. My gratitude has to do with the connections I have made because of this disease.
In the FA community, we often refer to one another as FAmily. The “F” and the “A” are capitalized to represent those impacted by Friedreich’s ataxia and our unique connection.
If there is anything positive or beneficial about rare disease, it is the beautiful and wonderful members of the community. Although each disease-specific group may have a “small” number of those impacted by a particular diagnosis, the rare disease community is large. More than 7,000 known rare and orphan diseases affect more than 400 million people around the globe.
In the 12 years since my diagnosis, I have had the privilege to meet many others living with FA, along with their friends and family. I also have made friends with people associated with other diseases.
Not only has my diagnosis provided a built-in people group, FA has pushed me to try things I probably never would have considered without a progressive threat to my body.
Before I knew about FA, I never thought about climbing mountains or riding my bike across the country. I certainly never thought I’d be in a documentary film. Nor did I dream of co-hosting a podcast from my apartment, on center stage, or with pharmaceutical teams.
Although I hate FA and other diseases that dictate how people spend their energy or time on earth, I’m thankful for the person FA has helped me become.
More importantly, I’m thankful for the FAmily that rallies behind me no matter what. A traditional family is made up of differing opinions, beliefs, political viewpoints, personalities, likes, and dislikes. FAmily is the same. There are all sorts of differences within our community.
Over the past month, I have come to realize that my FAmily is larger and more supportive than I knew. After I damaged my right femur and hip in a fall, friends and acquaintances from around the world reached out to ensure that I was OK and had everything I needed, and to remind me that I was on their minds.
The broken femur will heal, and the interruptions to my mobility and daily routine are temporary, but my FAmily reminded me that I’m not alone. My FAmily showed up with phone calls, emails, texts, care packages, and daily runs to Target on my behalf.
For me, FAmily has a deeper and more powerful meaning than ever before.
Although perhaps a different context, I’m reminded of a quote and a principle of thought that propels Ron Bartek forward: “Acting alone there is very little we can accomplish. Acting together, there is very little we will NOT accomplish.” Ron is the co-founder and president of the Friedreich’s Ataxia Research Alliance, and in my opinion the No. 1 reason this “little” rare disease has so many therapeutic efforts in the research pipeline.
We are made better by those around us. No matter how long it has been since you’ve reached out to someone important to you, please know that your efforts to connect are more meaningful than you may think. Don’t wait for bad news. Send that note or make that phone call today.
In our day and age, there is no good excuse for your silence when it comes to family or loved ones. The right time is always right now.
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.