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Being Rare, Is That a Good Thing?
Rare Disease day is February 28th, the last day of the shortest month of the year. Occasionally an extra “leap day,” February 29th, happens, making it a “leap year” or 366 days.
LEMS patients are extra-rare! Much rarer than leap days and leap years. The accepted incidence for LEMS is about 2.8 cases per million population.
Is that a good thing to be so extremely rare? Here’s what I came up with.
Being so exceptionally rare, almost no one you meet will have heard of LEMS. They will not know who Doctors Lambert or Eaton were or what they did.
As Lambert-Eaton patients, our treatments aren’t the usual either. No vaccination is in development. There are no over-the-counter medications for LEMS. We are at least lucky enough to have one FDA-approved medication, specifically for LEMS (amifampridine, also known as Firdapse and Ruzurgi).
Because Lambert-Eaton Myasthenic Syndrome is so rare, and the knowledge of it is hard to come by, there is undesirable fallout. Diagnosis can be difficult. Treatments can be costly. Getting things like insurance approval and obtaining disability status can be challenging.
I’m still trying to think of something good about LEMS, as the title asks.
Oh wait, there is something! I’ve met you.
Anything you can think of that’s good about having a rare disorder? What do you think or feel about the concept of being rare?
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