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I'm trying to find some one else or multiple people who have Porphyria in any form. To talk and share experiences and what new research is out or trials. I have CEP/HEP and I'm able to be outside for short times with out pain and what not. I feel like I'm a walking medical experiment I tried Celebrex and it works for me. I was told it was a 50% chance of working or less but i took the risk. It seems to work ive been taking it for a couple of years and it helps with the arthritis too. But everyday is a gamble.