Welcome to Erythromelalgia (EM) group. We are the ORIGINAL Erythromelalgia (EM) Group, dedicated to educating and supporting sufferers of this painful disorder (originally a yahoo group, now a google group!). We are a PRIVATE EM support group, meaning only members can read the posts or see the names of other members, thus creating a safer environment to discuss any EM issues.

The late Jim Read founded The EM Group in January 1999. Jim discovered people suffering with EM who were communicating via e-mail, but without the advantages of a web based system. Jim set up The EM Group, hosted by Yahoo, so people with EM would have a place online where they could come together to communicate, sharing their ideas, information and experiences with EM. In 2019 due to Yahoo’s closing of groups, moderators created the now Google Group.

This group is unique because many members have been part of the EM community since its inception. No other group offers the same level of support, along with practical experience and expertise. We encourage all members to find a doctor who can help sort through the numerous options in the search for improvement. The process of discovering the best treatment for relief is individual and can take time. To date, there is no single treatment for EM, and so far, no cure. It’s a process of trial and error, so having the support of a knowledgeable group of sufferers is what makes this the best EM Group on the Internet.

Please explore the website at Google: https://groups.google.com/forum/#!forum/erythromelalgia-em

Take time to look around, read some of the past messages that have been posted. When you feel comfortable, please introduce yourself and let us know how we can help you. To post a message to the group, send an email to: erythromelalgia-em@googlegroups.com. If you need to reach a moderator, click on “about” on the right, and then “contact owner and manager.”

This EM Group helped to create the most extensive and accurate EM Doctor List, which includes contact information for over 480 doctors in 26 countries and 43 US states, all of whom have seen patients with Erythromelalgia. This list can now be found on The Erythromelalgia Association's (TEA) website, as we merged our information. Go to erythromelalgia.org and click on Physician's Directory. Also, if you have seen a doctor who is familiar with or has treated EM please contact TEA and request they add your doctor to the Physician's Directory. This truly is a grassroots effort to help each other!

Join TEA! The Erythromelalgia Association (www.erythromelalgia.org) is an international, all volunteer non-profit organization dedicated to EM awareness, education and funding research. The TEA website provides valuable free information which can be shared with doctors. Become a member for a small fee and obtain access to medical articles, a member survey and more, all related to EM.

Thank you for joining our group! We’re a family of people who really do understand exactly what you are going through and who offer expertise, guidance and support.

Have fun! Be nice! Remember that humor is vital! And may cool winds blow on your afflicted parts!

Meg Edelson, Moderator, Mill Valley, CA, USA
Liz H, Moderator, New York, NY, USA

Erythromelalgia (EM)

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