Erythromelalgia is a rare condition that involves flare ups or episodes of symptoms like redness, intense pain, swelling, and burning sensation, usually in the feet and hands. It is also known by other names such as Gerhardt disease, erythermalgia, Mitchell disease, and Weir-Mitchell disease. One possible cause of erythromelalgia is a mutation in a certain gene that is related to the transmission of pain signals to the brain. 

Symptoms can be triggered by an increased temperature such as when one enters a warmer room, exercising, and eating something spicy. However, each person’s case may vary. Some may experience very mild symptoms and only in specific areas like the feet. For some, the symptoms are more severe and widespread.  

Like most rare conditions, it can take years before a patient can get a diagnosis for erythromelalgia. For one, not many doctors are familiar with it. Second, there is no single test that can diagnose this condition and doctors only rely on the symptoms experienced by patients and their medical history. Doctors may even brush off what the patients complain about especially when they’re not having a flare at the time of consultation.

Since its founding in 2011, the Living with Erythromelalgia community has helped patients as well as the caregivers and loved ones of patients to better deal with their condition. 

Many individuals who have been experiencing symptoms learn much information about erythromelalgia through our community site, which eventually leads to them getting a diagnosis.

Through the community site, patients and their caregivers become familiar with the names of doctors, therapists, and clinics that have received positive feedback from our members.

And although there is no cure for erythromelalgia at present, members learn about the different treatments available, until they find the combination of therapies that works best for them.  

And anytime they need to talk with someone without the fear of being judged or misinterpreted, they just post on site and then receive feedback from their fellow members. Our members also share stories that can bring hope or brighten one’s day. 

On June 29, the Living with Erythromelalgia community is celebrating its 10 anniversary. We would like to thank the moderators, community leaders, our ModSupport team, our members, and everyone who has been with us all these years. The Living with Erythromelalgia community has been safe and supportive because of you.

If you or someone you know is affected by erythromelalgia, we invite you to join our Living with Erythromelalgia community.