June is Myasthenia Gravis Awareness Month for our neuromuscular junction sister disorder. So let’s check in and see which one is the rarer of the two.
I’ve always heard LEMS is much rarer, and when pressed to explain my LEMS, I say something like, “It’s very similar to Myasthenia Gravis”. The assumption is anyone is more likely to know what that is because they’ll have heard of it. Nobody knows about LEMS, right.
Let’s see. The prevalence of LEMS in the population is, according to NORD, “…estimated worldwide prevalence of LEMS is about 2.8 per million…”. Okay. So for every million people out there, maybe 3 have LEMS. Got it.
Now let’s take a look at MG. According to the Myasthenia Gravis Foundation, “The prevalence of myasthenia gravis in the United States is estimated at 14 to 20 per 100,000 population”. Let’s make that equivalent to our LEMS estimate. The prevalence is 140-200 per million people.
So there you go. LEMS, 3. MG, 140 to 200. It’s not even close! (Smile)
So while Myasthenia Gravis is a rare disease, those of us with LEMS are ultra-rare.
I’d like to say that brings with it some bragging rights, but being ultra-rare comes with its own issues.
I’ll try to have more on MG through the month!