How rare disease awareness benefits the LEMS community

Raising our voices is crucial for both current and future patients

Lori Dunham avatar

by Lori Dunham |

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When I hear statistics about how many people are affected by the rare disease Lambert-Eaton myasthenic syndrome (LEMS), I’m overcome by the minuscule odds that my daughter Grace is one of them. How could such a rare and unknown illness affect my child?

Having LEMS as an adult is rare, with only 2.8 per million people affected worldwide. Being diagnosed with LEMS as a child is practically unheard of. According to the National Organization for Rare Disorders, as of 2019, there were only about 400 known adult cases of LEMS in the United States, and only 11 childhood cases reported in the literature.

Grace is one of those 11. She was diagnosed at age 15, after experiencing nine months of severe muscle weakness.

Grace’s illness is so rare that none of our family and friends had ever heard of it. Many neurologists have never treated it. Our daughter’s pediatric neuromuscular neurologist had to ask doctors at the Mayo Clinic here in Jacksonville, Florida, to help him diagnose her.

In our experience, most primary care doctors have never seen a patient with LEMS. Physical therapists don’t know the best plan of action for someone with LEMS and must first educate themselves about the disease.

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Therefore, LEMS awareness is imperative for our entire community. Only then can we gain access to the best doctors, the best care, and the best life for each of our friends affected by the condition.

This is also why initiatives like Rare Disease Day on Feb. 28 are so important. We must do what we can to advance the interests of those living with LEMS and those who have yet to be diagnosed.

Each of us has a voice and can use it for the betterment of the LEMS community. We benefit those who come after us every time we update our doctors or share new information regarding LEMS treatments. Organizations like the Lambert-Eaton LEMS Family Association are also vital in promoting advocacy, research, and community.

One challenge is raising enough awareness of a rare disease to make it an attractive investment for researchers and pharmaceutical companies. Some believe that because so few people are affected, it doesn’t make sense financially to invest in research or new therapies.

I beg to differ.

I’d say the development of treatments, medications, and cures is worth it, even if it only benefits one person. If it were your child, wouldn’t you think the same? There need only be one.

So we in the LEMS community work hard to make more treatment options available for the 400 people. We educate doctors and physical therapists for the 11 children. We petition for everyone around the world to have equal access to quality healthcare and therapies — not just for the existing patients, but also for those who will one day add to those numbers.

This Rare Disease Day, let’s do our part to spread awareness for even just one.

Note: 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. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.


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