Resource Center
The Lambert-Eaton LEMS Family Association
June LEMs Community Chit Chat
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. Diagnosis was often delayed—sometimes by months, sometimes by years.
A Shift in Awareness Strategy
Historically focused on neurologists, this year we are expanding outreach to include family physicians and primary care doctors.
You are not alonegether, we are making LEMS more visible every day.
A Shift in Awareness Strategy
Historically focused on neurologists, this year we are expanding outreach to include family physicians and primary care doctors.
A Global Network
Participants joined from the U.S., Canada, and the U.K., reflecting the truly global nature of the LEMS community.
A Growing Community
The LEMS community continues to grow stronger, finding support, resources, and a powerful voice in one another.
What Is LEMS?
Lambert-Eaton Myasthenic Syndrome
Lambert-Eaton myasthenic syndrome (LEMS) is a very rare condition that affects the signals sent from the nerves to the muscles. Muscles are unable to contract properly, resulting in muscle weakness and a range of other symptoms.
The immune system attacks the neuromuscular junctions – the areas where nerves and muscles connect.
Lambert-Eaton myasthenic syndrome is often associated with a certain type of cancer (SCLC, or Small Cell Lung Cancer). LEMS may result from the body’s efforts to fight the underlying cancer.
In some of the remaining cases, Lambert-Eaton syndrome develops following another autoimmune disease. Sometimes the cause is not known.
LEMS is an autoimmune disease characterized by a loss of a fraction of the presynaptic P/Q-type Ca2+ channels at the NMJ. These presynaptic P/Q-type Ca2+ channels normally open in response to presynaptic action potential activity and allow the influx of Ca2+ ions that trigger synaptic vesicle fusion and neurotransmitter release.
The LEMS-induced reduction in the number of presynaptic P/Q-type Ca2+ channels causes a decrease in the amount of action potential-evoked neurotransmitter release at the NMJ. Reduced neurotransmitter release leads to less effective initiation of muscle contraction, and as a result, patients with LEMS experience debilitating muscle weakness.
Watch the webinar, Strategies for Living with LEMS
We understand that every patient is different and has unique needs. No information provided on this website should replace the evaluation, diagnosis and treatment of one’s personal licensed physician.
If you or a loved one is having a mental health crisis, there is help!
Call 911 if you or someone you know is in immediate danger, or go to the nearnest emergency room.
Please Call 988 for support for yourself or a loved one. The Suicide & Crisis LifeLine VETERANS CRISIS LINE
Call 988 and Press 1 or call 1-800-273-8255, Press 1 Text 838255 for confidential support. 24 hour a day, 7 days a week, 365 Days a year.
Primary Care Provider: Your primary care practitioner can be an important resource, providing initial mental health screenings and referrals to mental health specialists. If you have an appointment with your primary care provider, consider bringing up your mental health concerns and asking for help.
The Lambert-Eaton LEMS Family Association
Lambert-Eaton Myasthenic Syndrome (LEMS)
PREMIUM & COPAY PROGRAM
What is the purpose of this program?
Having a rare disease is difficult. Adding in the complex care required to treat or manage that disease and figuring out how to pay for it makes a rare diagnosis even harder.
NORD’s Lambert-Eaton Myasthenic Syndrome Patient Assistance Program offers eligible individuals diagnosed with LEMS financial support to pay for out-of-pocket healthcare costs that are directly related to the care and treatment of LEMS.
Who is eligible to apply?
This program is designed to help patients who:
- Have a diagnosis of LEMS.
- Are a United States citizen or U.S. resident of six (6) months or greater with evidence of residency such as a utility bill showing the patient’s name and.
- Meet the program’s financial eligibility criteria.
How do I get more information and apply?
Contact NORD's LEMS Program
Monday-Thursday 8:30am – 7:00pm ET
Friday 8:30 am – 6:00pm ET
- 203-616-4308
- 203-349-3198
- LEMS@rarediseases.org
- US MAIL to: NORD Attention: LEMS Program 7 Kenosia Avenue Danbury, CT 06810
The Patient Advocate Foundation has "case management" services to assist LEMS patients.
Visit Patient Advocate Foundation Here
The Lambert-Eaton LEMS Family Association Tax Return for 2024.