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Who’s Rarer? Myasthenia Gravis or LEMS?
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! -
5 Replies
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do you have the link for these lems percentages? Thanks
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Here’s a link on MG. 14-40 per 100,000 population.
https://rarediseases.org/rare-diseases/myasthenia-gravis/Here’s a link for LEMS, 2.8 per million.
https://rarediseases.org/rare-diseases/lambert-eaton-myasthenic-syndrome/
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Here’s a link on MG. 14-40 per 100,000 population.
https://rarediseases.org/rare-diseases/myasthenia-gravis/Here’s a link for LEMS, 2.8 per million.
https://rarediseases.org/rare-diseases/lambert-eaton-myasthenic-syndrome/
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Thank you so much for this link! I often get asked at the Drs office but never have a concrete answer. Now I do with research to back it up !
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Having both is the rarest. I have both (plus several other autoimmune conditions) and it is sometimes called Myasthenic Overlap Syndrome. I’m not the only one though!
https://pubmed.ncbi.nlm.nih.gov/26418033/
I respond to and take both Mestinon and Firdapse daily and respond to both IVIG and plasmapheresis.
Don’t ask me which —MG or LE or both — landed me in the ICU in respiratory failure. Use a non-invasive ventilator, which has decreased hospital stays significantly and improved respiratory function significantly.
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Yes! I have read a few stories where patients have been diagnosed with LEMS and MG together. It’s good to hear you’ve got a good, non-invasive ventilator to use as well, and it’s working! Thanks for sharing.
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