Community is Essential for Lambert-Eaton Myasthenia Syndrome Patients During the Pandemic

Quarantine during COVID-19 has been difficult for everyone. It’s socially isolating, mentally draining, and physically limiting.

We all find community different places. But no matter where we find it, it brings us joy, comfort, and a sense of communal understanding. As sports practices stopped, museums closed, offices turned remote, and even playgrounds shut down, many of us lost our community.

However, there is some solace knowing that we are all going through this together.

It also has made us realize the power of human connection like we never have before. The community around us can have more of an impact than we ever realized.


Grace is 16 years old and lives with Lambert-Eaton myasthenia syndrome (LEMS). Due to her condition, her family was all especially careful to socially isolate.

School was virtual, and all extracurricular activities were canceled. The family explained that they felt disconnected from their community, as many did.

What hit them the hardest was losing their church. Through it, they felt a sudden loss of support. Church was not just a place to foster their spiritual needs they explain, but a place to connect with some of their deepest friends.

Virtual Support

We’re now over a year into this pandemic, and things are beginning to open up again. But Grace’s parents explain they are still relying heavily on virtual forms of support.

Virtual support groups can be a fantastic way for those with rare diseases and their families to connect. Online groups are a great way to share information and stories with a small community of people facing the same challenges all over the world.

Grace’s parents recently connected with some other families facing LEMS who they found on online Facebook groups. They wanted to discuss potential treatment options with other families who had faced the same decisions. There is nothing like talking to someone who knows exactly what it is you have gone through or are going through.

Continuing Community

If this pandemic has taught us anything, it is that it is important to continue to foster community, no matter the circumstances, explains Grace’s mom.

This community doesn’t have to be in person. An online community can provide similar benefits to those who aren’t able to currently be together physically. In the time of a global pandemic, this kind of community has been all the more paramount.

You can read more about Grace’s family’s thoughts on this and the importance of community in rare diseases here.

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