About Us

What is Livingwitherythromelalgia.org?

Livingwitherythromelalgia.org is a dedicated patient-to-patient support community for families affected by erythromelalgia (EM). Livingwitherythromelalgia.org is powered byBensFriends.org, patient support communities for rare diseases, and is run by volunteer moderators who have been affected with erythromelalgia.


Who can join Livingwitherythromelalgia.org?

If your family has been affected by EM, consider Livingwitherythromelalgia.org your second home. Livingwitherythromelalgia.org, as well as the rest of BensFriends.org’s patient communities, is free for members to join.

What is Erythromelagia (EM) ?

Erythromelalgia (EM) is a rare neurovascular pain disorder that can cause redness and pain in all parts of the body, but most frequently the extremities, such as the hands and feet. It is characterized by intense burning pain, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature. The specific underlying cause of EM remains unknown.

EM was identified as early as 1878 by Mitchell-Weir. The hallmark features of this disease are painful, swollen extremities intense burning pain and increased temperatures of the feet, legs, and hands. EM not only causes extreme pain, but also affects its victims physically, psychologically, and socially. For EM suffers, life becomes a continual search for pain relief. There are two types of EM, Secondary, which is treatable, and Primary, which usually occurs in children as early as 2 years old. The Mayo Clinic, one of the world’s most renowned research hospitals, is very interested in the disease and has a protocol in place to study EM. All they need is funding.


What is BensFriends.org?

In 2007, Ben Muñoz suffered a rare form of stroke caused by an AVM. He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.

BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, BensFriends.org provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives.

You can learn more about BensFriends.org at http://www.bensfriends.org or watch one of our videos at http://www.youtube.com/BensFriendsVideos.