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Hello Jim: Firstly, your age ??.You have to have a medcial physician first and from there he will access and REFER you to either of the following, Hematologist, Internist,Geneticist. They all have their 7 years of medical training followed by POST GRADUATE in a whole array of Medical Diseases/Disorders. Having this condition, which you know is Life Long, but there are many things that you can also do for yourself, like avoiding foods which trigger symprtoms...White Flour, Tonic Water, Wine, Dried Fruits and Ice Cream to name a FEW.....Do see your personal physician and under a Specialists Direction, you will find yourself with reduced stress as PROPER MANAGEMENT IS *** KEY *** .....My personal best to you !