I am in my first week as a member - fantastic support group! I am very interested in research regarding erythromelalgia - especially areas regarding treatment options, life expectancy, life impacts (e.g. depression, debilitation, loss of employment etc) and so on. I would really appreciate any suggestions and will share myself what I have and find. Many thanks.
sorry that you had to join this webpage. I can't really help with experience because I am new here too. But look up Lauren Fraser, she has a lot of information and if you are a Facebook user there are two groups. One is hers - Erythromelalgia-A helping hand and the other one is A Burning Path, I believe. There is also TEA - The Erythromelalgia Association.
Scientist have been working on a medication to reduce pain - they seem to be lucky, there could be something available in a few years. A report is also on the Internet , maybe you can find it if you google NA1.7 because I don't know where to find it right now.
Wish you a lot of luck with everything
Thanks dkel - I just read the links you provided - quite interesting and good to have for any doctor
who may need help trying to figure out what's wrong with his patient.