Raising Awareness of LEMS
Lambert-Eaton myasthenic syndrome (LEMS) is a very rare disease, with researchers estimating it affects about one person in every one million. Like many rare diseases, LEMS could well be underdiagnosed, especially in an aging population. Few physicians are very familiar with the disease, and many may never treat a person with LEMS.
As a result, some patients may never know they have this disease. Others may be diagnosed in later stages, when the disease has progressed, and severe and possibly irreversible damage has already occurred.
Why is greater awareness important?
The sooner a LEMS patient receives a diagnosis, the sooner treatment can begin to help maintain life quality and slow disease progression.
Increasing awareness of the disease is, for these reasons, of considerable importance. It also can lead to greater research work and research funding, raising a likelihood of new and more effective treatments. Someday, this research might even lead to a cure.
Organizations that can help
At present, no organization works solely to promote the cause of LEMS, but a number with overlapping interests support research into this disease and have resources of use to those trying to raise awareness. For example, The Myasthenia Gravis Foundation of America has designated June as myasthenia gravis awareness month; myasthenia gravis is a disease with similar symptoms to LEMS.
Other stakeholder organizations for LEMS include:
- The Muscular Dystrophy Association
- The American Autoimmune & Related Diseases Association
- The Genetic and Rare Diseases (GARD) Information Center
Last updated: Sept. 14, 2020
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