It’s obvious that things don’t change simply because we turn the page on another calendar year.
Typically, the early weeks of a new year set the stage for considering new goals, establishing new disciplines, and developing new habits for pursuing what is important to us.
I find the present moment to be a great time to consider what I want to accomplish this year. This is mainly due to the restrictions on daily activities that have removed a lot of the normal distractions that so easily bombard any given day of the week. Whether they be time delays caused by traffic, overcrowded public gyms, or just the day-to-day social commitments that so easily fill my free time, I can sometimes find a silver lining to many of the limitations we face as January 2021 unfolds.
However, another thought that has been floating about in my mind is the correlation of the pain of the pandemic versus the pain of rare disease.
There is so much hope tied to the “warp-speed” development of COVID-19 vaccines. The world is counting on those vaccines, along with continued physical distancing and vigilant habits in washing our hands and wearing masks, to help bring an end to the coronavirus.
I hope relief comes quickly.
I have a lot of hope for rare diseases, too. They just don’t seem to command the same sort of urgency that we have witnessed for the coronavirus.
I’m not at all disheartened by this, nor am I disappointed. I’ve known plenty of people affected by both a rare disease and the coronavirus, and I know firsthand the impact COVID-19 can have on preexisting conditions and high-risk factors. In some ways, this virus has presented another set of challenges that rare disease patients, families, and caregivers have been best poised to navigate.
Instead, I feel a renewed sense of hope today, believing that anything is possible when our efforts are aligned and our ambitions remain committed to helping as many people as possible.
When I think of my disease, Friedreich’s ataxia, and the hundreds of scientists working all over the globe to cure it, I feel a sense of gratitude. Especially when I consider the implications their research has on advancing treatments and cures for other mitochondrial and neuromuscular conditions.
I don’t expect a cure to miraculously appear, but I do expect the work of all of us, chipping away at the seemingly impossible tasks of funding and finding cures and treatments, to be the relief we hope for at deeply rooted levels.
This pandemic has affected everyone differently, and in many ways, rare diseases affect people differently, too. However, if there is a shared lesson from 2020 for me to draw on, it is the unstoppable resolve everyone I know possesses to beat COVID-19 — and their rare disease, too.
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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