A rare disease with robust support
Lambert-Eaton myasthenic syndrome (LEMS) affects approximately 3,000 people in the United States.
That’s 3,000 out of about 300 million.
That can make a rare disease feel even rarer and may make you feel alone.
But what happens when you bring all those patients together in one place? And not just patients, but caregivers, counselors, and healthcare professionals. Suddenly, the room is filled with other people who are really interested in learning and sharing all that they know about LEMS.
That’s why LEMS Aware was created—to provide a central gathering place where the LEMS community can share helpful information, lifestyle tips, and inspirational stories that may make living with LEMS a little easier.
Lifestyle tips for patients with LEMS
As with any chronic condition, there are things that you can do to help maintain your health and improve your quality of life. The following tips may be especially helpful for patients with LEMS.
Stay on schedule
Follow your doctor’s prescription as closely as possible. This is especially important at the start of treatment, when your doctor will be titrating (adjusting the amount of medicine you take) to find the exact dosage that provides you with the most symptom relief and the fewest side effects.
With your doctor’s approval, consider light weight training or physical therapy to help improve stamina and maintain muscle strength. Daily walking and breathing exercises may also increase your energy levels.
Symptoms of LEMS may get worse when you become overheated or have a fever. Avoid taking hot showers or baths. Be careful not to overdo exercise. Contact your doctor if you start noticing signs of a cold or flu.
Get 8 hours of sleep
A full night’s rest may help you manage fatigue and reduce stress. Try to limit alcohol, caffeine, and screen time to make it easier to fall asleep.
Eat a healthy diet
Be sure to include lots of fruits and vegetables to give your body the nutrients and vitamins it needs to stay energized and minimize fatigue.
Protect lung health
Because LEMS can be associated with lung cancer, help reduce your risk by avoiding exposure to tobacco smoke and pollutants, and have your home checked for radon.
LEMS and COVID-19
Recommendations for patients
An international group of scientists released treatment guidelines for patients with Lambert-Eaton myasthenic syndrome and related neuromuscular conditions during the COVID-19 pandemic.
Here is a summary of their key findings and recommendations for LEMS patients that you and your caregiver should be aware of:
- Continue current LEMS treatment and medications unless your doctor tells you otherwise
- If you’re receiving infusion therapy from a hospital or center, talk to your doctor about switching to in-home infusion if possible
- Avoid live vaccines; you should only receive vaccines that have been heat-killed
If you do contract COVID-19 and have:
- Mild symptoms: Continue your current treatment as directed by your physician
- Severe symptoms (requiring hospitalization): Talk to your doctor about pausing immunosuppression therapy until you are out of the hospital
Patient support organizations
There are several organizations that provide support for people living with Lambert-Eaton myasthenic syndrome and other rare diseases. Check out their websites for more information that you can use.
National Organization for Rare Disorders (NORD) is an organization committed to the identification, treatment, and cure of rare disorders through educational programs, advocacy, research, and patient services.
Global Genes is a rare-disease patient advocacy organization that works to build awareness, educate the global community, and provide connections and resources.
NIH Genetic and Rare Diseases (GARD) Information Center provides access to current, reliable, and easy-to-understand information about genetic and rare diseases.
The Myasthenia Gravis Foundation of America (MGFA) is committed to finding a cure for myasthenia gravis (MG) and closely related disorders, improving treatment options, and providing information and support to people with MG through research, education, community programs, and advocacy.
The American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) is a nonprofit membership association dedicated to the advancement of neuromuscular, musculoskeletal, and electrodiagnostic medicine.
The Muscular Dystrophy Association (MDA) is a caring group of families dedicated to the relentless pursuit of a promise to free families from the life-threatening effects of muscular dystrophy and muscle-debilitating diseases.
The Muscle Movement Foundation is a patient support organization whose mission is to enhance the quality of life of families who are affected by neuromuscular disease through support groups, inclusion, and life-changing accommodations.
More content is on the way for LEMS Aware, including video stories with real patients who are living and thriving with LEMS. Sign up to stay informed about new additions to the website as well as other resources that become available.