Raising Awareness of LEMS

Raising Awareness of LEMS
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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?

Early treatment is important for everyone with LEMS, but especially for those whose disease is associated with small cell lung cancer (SCLC).

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 monthmyasthenia gravis is a disease with similar symptoms to LEMS.

Other stakeholder organizations for LEMS include:

 

Last updated: Sept. 14, 2020

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Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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