Feeling Good? Rare Disease Day Is Also for You

Missy Elliott’s history-making induction in the Songwriters Hall of Fame last month combined with her appearance on Ariana Grande’s fourth album Sweetener (which we have said thank u, next to far too quickly imo) can make it seem like she has been there all along, but we should not forget too soon that empty time in the aughts when the supa dupa star seemed to have all but disappeared from the music scene. In interviews with venues such as People and Billboard, Elliott explained that her absence was due to the grueling physical effects of Graves’ disease, a rare autoimmune disorder that at times made it impossible for her to even hold up a pen. While she has since found ways to manage her condition and return to music, most people with rare disorders and diseases aren’t so lucky. For this reason, on February 28, people in more than ninety countries will participate in Rare Disease Day, a decade-old global awareness day founded by EURORDIS and its Council of National Alliances to help inform the public about the rare, challenging, and typically incurable conditions that so often force people to pull a disappearing act from their careers and the public.

According to the National Organization of Rare Diseases (aka NORD), there are now more than 7,000 disorders and diseases in the U.S. that have earned the “rare” designation. And while the odds are better that you will be struck by lightning this year than be diagnosed with one of these conditions — a chance of 1 in 700,000 versus 1 in 100,000 — more than 300 million people around the world currently live with these conditions. This means that while the 7,000+ conditions are rare, the experience of having a rare illness is not. In fact, it is estimated that as many as one in twenty people will experience a rare disease during their lifetime.

To put things in further perspective, these numbers are conservative estimates, as it can often be difficult to pinpoint exactly when one has joined the Rare Disease ranks due to the absence of clear diagnostic tests. As a chronically ill person who was told years ago that they “probably” have Ménière’s disease, an incurable inner ear disorder that can cause extreme bouts of vertigo that make standing up or walking seem like an Olympic sport, I fell into this limbo category — until I didn’t anymore. Last summer, after months of a malar-like rash on my face that would appear and disappear, I awoke at 2 am on my birthday to a rapidly swelling left hand that was simultaneously turning a shade of Valentino red. This was followed by regular bouts of swelling, redness, and pain in both of my hands and my feet over the next several months that would be diagnosed (uncharacteristically quickly thanks to a smart specialist) as the rare — and as yet incurable — disease Erythromelalgia. Like Elliott, I started to have difficulty holding my favorite Pilot G-2 rollerball, and my spare time was devoted to searching for tools to open jars (yes, you are still a feminist if you use a jar opener) and googling hacks that would somehow allow me to keep using my beloved All-Clad pans with their notoriously difficult handles.

With each day now a special day dedicated to everything from cinnamon buns to social causes, you may wonder why your participation in Rare Disease Day would matter — especially if you consider yourself a perfectly healthy person. If the fact that you are probably already acquainted with someone with a rare illness whether you know it or not and the pretty good odds that you will experience a rare illness for yourself are not enough, you should know that more than 90% of rare diseases still have no treatment or cure, and widespread public dialogue can be the biggest and most effective catalyst for education and policy-making while influencing and increasing the funding for research that can lead to proper diagnoses and cures. This means that posting or sharing a simple, supportive #ShowYourRare or #RareDiseaseDay tweet can be the catalyst for viral (the good kind!) progress and positive changes in the lives of millions. Not a bad return for a few hundred characters and a couple of emoji.

Photo by Hush Naidoo on Unsplash

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