Hearing Lambert-Eaton Myasthenic Syndrome on TV Was a Surprise
Any accurate publicity for Lambert-Eaton myasthenic syndrome is encouraging
It always amazes me when I hear Lambert-Eaton myasthenic syndrome (LEMS) mentioned somewhere outside of our daughter’s neurologist’s office. Most people have never heard of this particular disease. Oftentimes when I’m asked what illness my daughter has, I can’t get “Lambert-Eaton myasthenic syndrome” out of my mouth before their eyes glaze over and the moment is lost.
Living with or caring for a loved one with a rare disease poses many challenges. Rare diseases like LEMS occur so infrequently that most people, including medical professionals, have little knowledge of them. We often find ourselves educating not only family and friends, but also medical professionals and their staff.
I remember the first time I heard LEMS mentioned on television after our then-14-year-old daughter Grace was diagnosed. A commercial for Botox was on, and as with all pharmaceutical commercials, it listed a plethora of warnings at the end. I was flabbergasted when they mentioned that people with LEMS, myasthenia gravis, and ALS should not use Botox.
More recently, I was told that LEMS was mentioned on the television show “The Resident.” In episode six of season four, a patient of one of the resident doctors is misdiagnosed with myasthenia gravis, which turns out to be LEMS. When I heard that, I just had to watch.
Anytime LEMS is brought into the spotlight, I think it is a good thing. Although I probably would not encourage my daughter to watch the show, I think it is spectacular that someone knew enough about LEMS to feature it in an accurate way in a television drama.
With exposure comes education, and with education comes research, new clinical trials, and hopefully, new treatments for an increased quality of life for those living with LEMS.
On a similar note, the Lambert-Eaton LEMS Family Association recently represented the LEMS community at the National Organization for Rare Disorders (NORD) Summit in Washington, D.C. There, the association’s team met with people from NORD, the EveryLife Foundation for Rare Diseases, and Rare Disease Legislative Advocates. The LEMS Family Association is a welcome addition to those advocating on our behalf.
Every opportunity we have as a community and as individuals to advocate for the larger LEMS population benefits us all. I am encouraged to see the strides being made in promoting LEMS awareness and look forward to the future benefits of these efforts.
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.