Patient Stories - Blog

Hello, my name is Sarah Shell.

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. I've been to Birmingham, New Orleans, and Atlanta. READ MORE.

Patient Meetings

Connect and learn! LEMS patients and caregivers gathered recently in Los Angeles for a meeting where leading doctors, and experts in rare, chronic disease shared information about living with and managing LEMS. Patients were able to connect with one another for the first time, learn about their disease and discover support available for the LEMS patient community! Patients and caregivers walked away better informed and empowered to manage their disease. Meetings this spring are scheduled in New York City, Cleveland, OH and Jacksonville, FL, and are free for patients and caregivers. Don't miss this chance to hear from LEMS experts and gain support. LEARN MORE.

Virtual Meetup
LEMS Community

Rare Is Everywhere!

  • LEMS is one of 7,000+ rare diseases in the U.S. identified by the National Institutes of Health.
  • Rare diseases affect 1 in 10 people in the U.S., that's 30 million people
  • 95% of rare diseases have no FDA approved treatment
  • About 50% of rare diseases do not have a disease-specific organization researching or supporting the condition.

Register to join the LEMS community online and begin connecting with patients today to learn more and share your journey!

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What's New?

Find out how you can connect with LEMS patients and caregivers through the Global Genes Meetup program. Visit globalgenes.org/LEMS to learn more. And, check out new resources for the rare community: From Molecules to Medicine is a three-part series to help patients and advocates better understand drug development, clinical trials and research, and how patients can effectively partner and share their voice in the process. Visit globalgenes.org/Toolkits!

Connect at Patient Meetings

An opportunity to meet other patients, caregivers and hear from physician experts and speakers specializing in the chronic disease of LEMS.

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Join the LEMS Online Community

Register to join the dialogue and meet patients, caregivers and families of those affected by LEMS. This is an open forum for patients to connect.

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LEMS Patient Stories

Learn about patients and their journeys and share your experience with others, helping cultivate an awareness and understanding of LEMS.

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