Only after my son’s muscular dystrophy diagnosis did I come to find out that Rare Disease Day is a thing.
Which I guess is the point, right? Rare means these many diseases are so low in prevalence, receiving so little press that they don’t get their own day or ribbon color or rubber bracelet to recognize them and “raise awareness” as these things go.
Scrolling through my social media this morning, I came up a meme celebrating Rare Disease Day and I kinda wanted to chuck my phone across the room. Celebrate? Ummmm, I’ll pass on that party. There isn’t one single thing about MD that I would don a party hat for. What is there to celebrate about progressive neuromuscular disease in any of its forms?
Since I’m not cutting celebratory cake today, I propose that rather than whooping it up (which, OK, I’m relatively sure isn’t what the meme’s original poster intended with her use of the term “celebrate”), we take a moment to educate ourselves. Rare disease isn’t limited to my corner of the world affected by neuromuscular disease; rare diseases affect all shapes and sizes of people and the internal systems that run those people. If you know someone who looks a little different than you do or behaves in a way that seems different than your behavior, or moves in a way that seems labored or off-center, take a moment to consider why that might be.
Rather than divert your gaze from what you observe as weird or different, instead maybe you do a quick little Google search. Maybe seek a smallest morsel of introductory knowledge and understanding. Knowledge and understanding are certainly entry points to empathy, the awareness of the feelings and emotions of other people. The world could stand a whole lot more empathy and human kindness these days. I’ll start: for information about muscular dystrophy, ALS, and related neuromuscular diseases, my launchpad is the Muscular Dystrophy Association.
I lied earlier when I said there was nothing to celebrate about MD. The faces of the MDA are worth celebrating. I’ve written time and again of the ways the Association has benefitted kids with neuromuscular disease in general and my son in particular. For my friends, family, blog readers, and even random strangers who’ve donated to our Muscle Walk team, YOU are definitely worth celebrating. For you, I’d definitely toss confetti! I’d even get balloons.