Importance of Support Networks for Patients with LEMS

Developing and maintaining a good support network is important for physical and mental health. Positive support from friends, family, peers and co-workers can make you more resilient.

Although specific studies about support networks among Lambert-Eaton myasthenic syndrome (LEMS) patients have not been done, it is likely that, as with other chronic rare diseases, having a good support network also is important for patients with LEMS.

What is a support network?

A support network consists of all the people who support you. This can be friends, family, or co-workers. These are the people you call when you have good news to share, need help, or just need to talk to someone you trust.

How can a support network help?

Patients with LEMS often experience pain and fatigue, which can contribute to anxiety and depression, though the exact connections between these conditions are not clear.

Researchers don’t know the biological mechanisms of how interacting with other people is beneficial. However, the effects seem clear — connecting with other people makes us fundamentally healthier, happier, and less stressed.

How can I find LEMS support groups?

For many people, especially those facing a new diagnosis, it can be difficult to build a support network. You may feel as if no one understands what you’re going through, or that you will be a burden on your friends and family because your illness isn’t going away.

If you don’t have a support network in place, finding a formal support group can be a good place to start. Some people find support groups through religious organizations, their workplace, or through involvement in the community. But there also are online and local structured support networks  available for people living with LEMS.

Talk to your healthcare team about support groups in your area. Search for local support groups online, and check social media.

Here are a few links that may provide support groups for LEMS patients (both online, and groups that may have local chapters):

• Muscular Dystrophy Association
• Myasthenia Gravis Foundation of America
• American Autoimmune & Related Diseases Association
• Genetic and Rare Diseases (GARD) Information Center
• myaware

Last updated: March 24, 2020

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