May 2016
Sarah Shell's LEMS Journey

Sarah Shell's LEMS Journey

I am 21 years old and I was diagnosed with the congenital form of Lambert Eaton Myasthenic Syndrome when I was 18. I first got sick when I was a sophomore in high school. I had lost 23 pounds and started showing weird neurologic symptoms. For example, my eyes stopped tracking left and right, I couldn't swallow well, and I began to pass out frequently. I was passed along from specialist to specialist so they could rule out the things in their specialty field. I heard everything from brain tumor, cancer, untreatable autoimmune diseases, and rare fatal genetic diseases. I went on the journey of specialists for about three years.
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February 2016
Romy Braunstein’s LEMS Journey

Romy Braunstein’s LEMS Journey

In 2000, my health was deteriorating. I was twelve months post herniated (L3,L4) back surgery and assumed something did not go right with the procedure. I visited the surgeon a few months later and read him my list of symptoms: chronic fatigue, muscle weakness, droopy face, slurred speech, bad balance, and unexplained falling. He said that the procedure went as expected and these symptoms had nothing to do with the surgery. He then referred me to a Neurologist in another department.
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Welcome to Living with LEMS Website

Welcome to Living with LEMS Website

LivingwithLEMS.org is a site for all Lambert-Eaton Myasthenic Syndrome (LEMS) patients, caregivers and family members that offers information, resources and support. The goals of this site are to build connections and offer resources and support to help LEMS patients become informed advocates for themselves and their disease. Because LEMS patients do not have a dedicated patient advocacy organization presently, Global Genes™, a leading rare disease nonprofit advocacy organization dedicated to eliminating the challenges of rare disease, powers this website.
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Share your Story

Help others learn about Lambert-Eaton Myasthenic Syndrome (LEMS) by sharing your story. Your personal journey will help inspire and connect other LEMS patients and inform rare disease stakeholders and the public about this rare, autoimmune disease. Raising awareness through story-telling is an effective way to advocate! Email Global Genes to learn more.