Friends and family, I am not going to be on here near that much for awhile. I spent the last 3 days at OHSU ER/ICU Observation for complications of the Ehlers Danlos Syndrome I have. My daughter and I both have this type. I need rest and lots of prayers or healing energy, not just for me but for my children, family, and friends. I love you, Im stubborn, and have a lot of fight in me. There are no EDS specialists in Oregon. All of my life savings, etc are gone to this injury/disease. Cover Oregons OHP doesnt pay for treatment for Ehlers Danlos Syndrome as its categorized a rare disease and not on their prioritized list for coverage. I need to get to Maryland eventually. They are opening the first EDS center in the US Aug.15th is ribbon cutting, and in Sept they will be seeing patients. If you know of medical grants or anything helpful to getting treatment for my daughter and I, I would be eternally grateful. This is a cruel, painful disease that becomes an endurance test of pain, dislocations, dissections, aneurysms, and is life ending. I want to save my daughter, or any of my children/family from going through anything like this. Im wiped out, emotionally, painfully, socially. If you have any ideas please PM me. Xo - Tomi Deveraux
Posted on: Mon, 11 Aug 2014 02:58:42 +0000
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