Anyone out here dealing with MASTOCYTOSIS?

I work for a 71-year-old woman with Mastocytosis, a mast cell disease. She is on Type 2 antihistamines, Gastrocom (sp?), Lyrica, and other pain and nerve medications, but is still having swelling of the mouth, tongue, hands and feet. She flushes almost daily, sometimes for hours, and often her feet and/or hands are swollen, red, and "feel as though they are burning." Is there anywhere we can turn for additional information and/or help? Any kind of input would be helpful, whether you are a doctor, research scientist, or a patient who has this rare disease. To my knowledge, blood work has not been done to test for the systemic, cancerous form of Mastocytosis. She is a member of the Mastocytosis Society and receives their newsletter. Any help and/or suggestions will be greatly appreciated.