Importance of 2nd Opinions

I have gone through going on 41 years of having to find out the health issues that have plagued my family. When I say my family, I mean myself and 3 daughters. My whole life has been a fight for getting my parents to listen, doctors to listen and even the schools/government. First finding out I was born with chicken pox, but long after I could've gotten help for it. Then finding out through Genetics that my daughters an I have Ehlers-Danlos. Then finding out that I was biopsied with late phase Sweet's Syndrome/Behcet's Disease. Now going on 41 and my youngest at 9 with scoliosis, poor vision, EDS, GI problems, and skin ulcers all the time.....she is going through PT/OT and our new genetics appointment is in 2/2013. I am going to request a tissue sample for a definite EDS type, and have all the kids ulcers/lesions biopsied. My kidneys are getting worse, my vision with cataracts and pupils dialating differently, Sphincter of Oddi, and too much more. Not only has it been an unnecessary fight, but I question why they are fighting me more than most. Is it my tattoo's, my aggressive and refusal back down, or they are in disbelief that I a non-degreed physician got it right and they didn't. It's because I care, and because it's my family that has to suffer and cope with it. Doctors are human too, doesn't make them GOD....but I will say, the few professors I do have, I value greatly for thier belief, patients, and care enough to be there by my side an stand up for me. I love my children enough to take the abuse that society can give, but my family that raised me to were busy with thier own personal problems. They didn't hurt why would they care, but when you live with it each day, each minute, and see your children suffer....either you ignore it....or you fight it and find help! I fight and get help....All Childrens denied it, University of Florida believed and treated it. USF helps me and fights me, but in the end, you cannot deny testing that is showing the progressive nature of the illness. Sometimes yes, I have broken down and been mentally beaten....but always get back up keep moving forward. What good is this life we live if we don't fight for something we believe in. After my seizure, I decided my children will never go through the BS I have to get help to get people to listen and maybe then people wouldn't turn to alternatives for help. Behcet's/Sweet's, and Ehlers-Danlos this is our family!

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