Dan and I often say that we are one in a million. This tongue-in-cheek statement loosely refers to the fact that there are nearly one million Americans living with Multiple Sclerosis, and each one of us is one of that million.
Pretty special, right?
Since our diagnosis, we have been lucky to integrate ourselves into that populous MS community. Some of our closest friends and many of our contemporaries also are living with the disease. Dan and I feel that between MS diagnosis anniversaries, awareness celebrations, the color orange, or celebrities disclosing their diagnosis, MS is anything but rare, right?
Not necessarily, Jennifer.
When I recently scrolled across a social media post acknowledging Rare Disease Awareness, I thought to myself, “Certainly that doesn’t include Dan, me or the other million Americans living with MS.”
To be sure, I sheepishly Googled, “Is MS a rare disease?”
I quickly learned that yes, Multiple Sclerosis IS a rare disease.
The risk for MS in the general population is about 0.5%. If a parent or sibling has MS, your risk is about twice that or about 1%.
Those are crazy odds. What’s even crazier is how Dan and I met, fell in love and got married. Us. Two people in Michigan who each are living with the rare disease of Multiple Sclerosis.
Rare Disease Day is Tuesday, February 28, 2023.
This international campaign is focused on raising awareness and generating change for the 300 million people (and their families) worldwide who are living with a rare disease.
What is so amazing about Rare Disease Day is that it broadens the community and connections for individuals who are living with conditions that have the potential to make them feel isolated and alone.
There is strength in numbers, and just like that, Dan and I and the 1 million Americans living with MS are part of a shared effort that includes at least 300 million people worldwide.
We all have a reason to celebrate and observe Rare Disease Day on February 28. This includes people like you and organizations like the National Institutes of Health. And, yes, even this married couple taking on MS in the middle of Michigan.
I didn’t realize MS was considered rare. Interesting. I worked in remote Alaska, and for years, the teacher across the hall helped me out when I needed it. She ended up being diagnosed with MS a few years later. There were two other teachers I worked with who had MS. I taught two out of three how to give themselves shots since I was the first one on them, and we lived so remotely, the drug company couldn’t send trainers to them.
I lived in rural SE Montana from 1990-92, which is considered a hot spot for MS. We had almost no neighbors for 20 miles, but of the few we had, most had at least one family member in the home with severe MS. There are missles out there, and I’ve wondered if those old things had something to do with it.
Thanks for checking in, Melissa! It’s so interesting to hear your experiences and that you were just as surprised as we were to learn that MS is considered to be a rare disease. Although, when we thought about it, before we each were diagnosed we didn’t formally know of hardly anybody who had the disease. And now we know so many people with MS, and a lot of them are really great friends (yourself included)!