ERCooley
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I' ve been sick on and off since pueberty, but since my pregnancy with my daughter 4 yrs ago I've been fighting to find the name to this mystery illness. I have alot of the nerve problems, mental issues, and sun sensitvity. I've been working with OHSU here in Oregon and they have thought genic for years but no idea of a direction. After the sun problem surfaced, it gave me whole new direction. They are looking at Lupus, but blood comes back normal. I came across this disease, and the more I read the more my whole life is finnaly making sense. I have so many questions about the disease, and would love to pick someones brain. Knowledge is power!! I'm also wondering if anyone knows if OHSU has any docs that specilize in porphyria. Thanks Erin |
