Despite whatever successes we saw in 2020, the year mostly will be remembered for a pandemic that affected almost everyone on the planet. Though the death, financial hardships, joblessness, and isolation due to COVID-19 are devastating, humanity may find an end to this horror soon.
As vaccines are distributed, first to healthcare workers and then residents in long-term care facilities, amid the growing excitement and relief, fragile voices whisper: “What about me?”
Sometimes this question is asked in social media groups for people living with Friedreich’s ataxia (FA). But anyone diagnosed with an untreatable disease understands. Although vaccines for a novel virus have been produced in record time, and although people like me, with untreatable, rare disorders, will greatly benefit from them, I find myself wondering, “What about a treatment for FA?”
When I was diagnosed in 1998, FA was only a slight inconvenience to me. I believed treatments for it would become available before it severely impacted me.
But in the two decades since, my disorder has progressed significantly. My movements, my hearing, my handwriting, and my voice have all deteriorated. FA is like a growing sponge, absorbing more and more of my abilities until it eventually absorbs my entire life.
Science hasn’t come up with a way to stop or stall FA’s progression. Without treatments or cures, those affected by untreatable degenerative conditions will continue to lose function, and many of us will die.
In late 2019, positive results from a clinical trial of oral omaveloxolone caused many FAers to believe our first form of treatment might finally become available within a year, as I previously wrote. But before last Thanksgiving, the U.S. Food and Drug Administration stated that available evidence didn’t yet support the investigational treatment moving toward consideration for approval. The FDA recommended further studies, which will push any potential approval date further into the future.
So, when a vaccine for an illness that is barely a year old comes out, patients with long-term, untreatable diseases can’t help but feel jealous and disappointed. “What about me?”
Although treatments for Friedreich’s ataxia and many other debilitating conditions do not exist yet, we can’t let our disappointment fester into bitterness. We’ve seen the wonders and capabilities of science.
Part of the reason COVID-19 vaccines were developed in record time was that everyone on the planet was aware of its lethality and contagiousness. Even if you don’t suffer from Friedreich’s ataxia, by choosing to read my column you are helping raise awareness about FA. You are moving us closer to a treatment. So, thank you.
A treatment for FA will come eventually, I have no doubt about that. I hope I live to see it.
But until we get to that trophy, I’ll continue focusing on small successes when I see them.
Welcome to “Little Victories, 2021.”
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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