Helpful hints for living with the symptoms of mast cell disorders shared by patients living with these disorders – Being Prepared

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Being Prepared:

 I keep a folder with me that stays in the car of all my doctors contact info, TMS emergency protocol, MY specifics for emergencies, allergies, med info, I.C.E. phone contacts, brief medical history, list of conditions and brief explanation there of symptoms, ANA warning, most recent test results and letter from my physician stating that I require a service dog. There is another copy stapled and folded in my dog’s emergency backpack, as well as one in our kitchen cupboard. It’s a LIFESAVER…LITERALLY!


Be an informed, self- advocate. Nobody knows your body and what you go through better than you do. I’ve had to stand up for myself when I could barely stand, and educate medical and hospital staff and insurance companies way too many times. You have to be able to intelligently represent yourself and if you are too ill, try to have family members or trusted close friend that you can coach ahead of time to advocate for and with you. 

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