Feb 26, 20213 min read

Rare Disease Day & March Programming/Events

Calling all zebras, it’s Rare Disease Day this Sunday! In case you didn’t know, the zebra is the official symbol of rare diseases in the US (National Organization of Rare Disorders [NORD], 2021). Why you may ask? As we all know, zebras have those unique sets of stripes that make them such majestic creatures. Like zebras, those living with rare diseases also have “their own set of stripes,” as there are more than 7,000 unique rare diseases (NORD, 2021). On the last day of February each year, we choose to honor those stripes and raise awareness for all the people living with a rare disease.

Myasthenia Gravis is considered a rare disease. According to NORD, “myasthenia gravis has a prevalence of approximately 14-40 per 100,000 individuals in the United States.” Did you know that it is also considered a snowflake disease? Like a snowflake, MG can look different from person to person.

Here are some other quick stats about myasthenia gravis that I thought were particularly interesting:

symptoms most commonly peak in women during their 20s and 30s and in men in their 50s and 60s.
approximately 75% of individuals with myasthenia gravis have distinctive abnormalities of the thymus.
acetylcholine receptor antibodies may be detected in up to 90% of affected individuals with gMG and up to 50% of those with ocular MG. Muscle-specific kinase antibodies are found in about 3-6 percent of patients and LRP-4 antibodies even more rarely.
infants of mothers with an MG diagnosis may develop a temporary form of the disorder, typically starting within 48 hours after birth.
there is typically no family history of MG for those who live with the diagnosis, however, approximately 5% of patients may have family members with MG or other autoimmune disorders.

(The above information was sourced from the National Organization of Rare Disorders, 2021).

I am part of that 90% statistic. I have the AChR antibody and was diagnosed with myasthenia gravis in 2005 at the age of 13. It’s not always easy living with a rare disease. In fact, it’s never easy.

Living with a rare disease means having to educate people about my diagnosis. It means taking tremendous amounts of medication and utilizing different treatment options just to live a somewhat normal life. It means feeling isolated at times because you really don’t know what it’s like to live with MG unless you have it. It means defending your experience because people do not understand the disease.

But living with a rare disease also means being a part of a unique community. It means meeting people that I probably never would have encountered if it wasn’t for our shared diagnosis. It means teaching others about acceptance, equality, inclusion, and compassion. It means living a life that looks different than most, but then again, what’s the fun in being ordinary?

Happy Rare Disease Day to all my fellow Zebras! Are you celebrating this Sunday? Let us know, what you are doing to honor this community of ours! To check out how to participate in Rare Disease Day, head to the NORD website and Show Your Stripes.

After Rare Disease Day comes March! Can you believe it? Check out our March events below: