How to Make the Most of Our LEMS Forums

Our forums for Lambert-Eaton myasthenic syndrome (LEMS) are now live. If you have LEMS or a loved one with the condition, you may be wondering who these forums are for and how to use them.

Here are answers to these questions and some others:

Who are the forums for?

The forums are designed for LEMS patients and their families and friends. Anyone over age 18 can build a profile and start a conversation.

What are the forums for?

The forums are for safe, kind, open communication between people in the LEMS community. You can start a topic on anything you’d like to talk about. If you’d prefer to speak privately to another forum member, you can click on their name and start a private conversation.

The goal of the forums is to have a place for people to answer each other’s questions and build a sense of community. Have you had a particular side effect on a treatment? How is your doctor treating your symptoms? You may want to talk to other patients about a particular symptom or a problem you are dealing with, and they may have ideas to help.

The forums are moderated by Dawn DeBois (columnist of LEMme Tell Ya) and Ashley Gregory.

What can I talk about?

The forum topics are open, and discussions are for informational purposes only. You can talk about whatever’s on your mind, or go through some of the current topics:

• Ruzurgi treatment
• The Big C (dealing with cancer)
• General Questions and Topics
• Coronavirus (COVID-19) and LEMS
• … and many more

How can I ensure my safety on the internet?

As with any public internet forum, make sure not to reveal private information. You can take a conversation private if you’ve built a rapport with someone, but don’t give your personal identity to anyone on a public post.

Also, remember not to take medical advice from strangers on the internet and do not click on links that take you to unknown websites.

Make sure that your antivirus software is up to date, and clear your web browser’s cache of cookies regularly.

Users must also abide by the forum’s code of conduct.

Last updated Aug. 10, 2020

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Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.