For most of the 140 years since it was named, the disorder known as burning man syndrome has operated in near-total obscurity. Even today it afflicts perhaps 200 to 500 people in all of North America and a few thousand worldwide. Until about three years ago, essentially all medical knowledge about it was contained in its name, erythromelalgia, which translates as "painful red extremities." Few doctors knew of it, only a handful had seen it, and none knew what caused it or how to treat it. At any given time, the few thousand people who had it suffered its torment--searing heat in the feet and lower legs and sometimes in the hands--without understanding why. Most thought they were completely alone.

Pam Costa, 42, lived her first decade this way. She is one of perhaps 30 or 40 people in the U.S., and possibly 200 to 500 worldwide, known to have an inherited form of the disease.

This article was originally published with the title The Pain Gate.

Comments