In 2008, The Erythromelalgia Association distributed a comprehensive survey to its members at the time (approximately 650 surveys were sent) covering questions on sypmtoms, treatment, diagnosis among other issues. The survey elicited 427 responses, approximately 66%!
Click here to see full survey.
(Note: Page 51 of survey contains a link to detailed survey responses; this link is no longer active)
Link to Detailed Survey Results