June LEMs Community Chit Chat: Shared Experiences Lead to a New Advocacy Efforts

The LEMS patient community gathered for a virtual meeting to share personal stories and compare diagnostic journeys. As many patients shared a common theme in their journey to diagnosis – the LEMS Family Association solidified their plans to start advocating to a new community – the family physician or nurse practitioner. 

Common Threads in the LEMS Journey

Most attendees described their first symptoms as leg weakness, difficulty with stairs, balance problems, or extreme fatigue. While many initially visited a primary care doctor or nurse practitioner, diagnosis was often delayed—sometimes by months, sometimes by years.

Patients were commonly referred to rheumatologists, orthopedists, or cardiologists before ultimately seeing a neurologist who could confirm a LEMS diagnosis through EMG testing or VGCC antibody results.

A Shift in Awareness Strategy

Historically, the LEMS Family Association’s awareness efforts have focused on neurologists. This year, the community is expanding its outreach to include family physicians and primary care doctors—the providers patients often see first. Volunteers will represent the community at the AAFP FUTURES Conference this summer to connect with medical students and family medicine residents.

A Global Network

Participants joined from across the U.S., Canada, and the U.K., reinforcing the truly global nature of the LEMS community. Some shared that they were diagnosed while traveling or visiting larger medical centers—highlighting the value of specialized care and persistence.

The LEMS community continues to grow stronger. Whether newly diagnosed or still navigating the unknown, patients are finding support, resources, and a powerful voice in one another.

This monthly chit chat was a good reminder to all patients: You are not alone—and together, we are making LEMS more visible every day.