Help! I have aggressive systemic mastocytosis. What do I do?

See a specialist! Treatment of aggressive systemic mastocytosis can be extremely complex. If at all possible, you should see a specialist with experience treating this disorder. The mastocytosis society maintains a list of specialists, which can be viewed at http://tmsforacure.Org/patients/research_centers_1.Php. There are ongoing clinical trials for treatments that may help slow the progression of the disease.