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The Rarest of the Rare, LEMS and MG in Children
One of the first things we learn after getting a Lambert-Eaton diagnosis is how rare it is. It’s even rarer than rare in young children. I suspect the same may be true of our more common, sister disorder, Myasthenia Gravis. I decided to check it out, and here’s what I found.
In an Orphanet search for Juvenile Myasthenia Gravis (JMG) linked HERE, “Estimated incidence has been reported at 1/1,000,000 to 1/200,000. The disorder is uncommon in Europe and North America (10% to 15% of cases of myasthenia gravis…).
For Lambert-Eaton in the Orphanet search linked HERE, “The prevalence is estimated to be between 1/250,000- 1/333,300 worldwide.” This includes adults and children. In the NORD rare disease database, “LEMS is extremely rare in the pediatric population, and there have only been 11 affected children reported in the literature.” That is rarer than rare!
We all need support from family, friends, and others in the rare disease community. None more so than the young people affected by LEMS or JMG!
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