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urticaria pigmentosa/mastocytosis

Judy

Message 5 of 14 Previous Next



I was diagnosed a year ago...it took 10 years for them to figure out what was wrong with me...there is a lot of research going on at this time around the world...and several meds and protocols that have been established for Mastocytosis. It is best to get to a Hematologist/Oncologist for treatment and do a LOT of research on the net or at a Medical Library as well as contacting the Mastocytosis Society for info,updates and guidance. Make sure you wear a Medic Alert emblem warning of the disease and possible complications, the dangers of Anesthesia (can cause mast cell degranulation leading to cardiovascular collapse and death) and simple allergies,stress,temperature extremes,medications etc.can promote the chance of Anaphylactic shock. I carry injectable Benedryl and an Epinephrine injection with me at all times...as well as an info sheet with my medical Hx, description of/treatment/complications of Mastocytosis.

 


   
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