darlinglittle-em asked: Hey, I know this is completely random but I was looking threw the things that were tagged Porphyria and came across you. I saw you may have it and were looking into maybe getting tested(?), My sisters and I got tested (mom died from it) out in California but results were inconclusive. I was curious what you have learned/ heard about it. Thanks so much.
Hi there, so sorry to hear about your mum! That’s tragic :(
Yes I have it. It is very hard for the doctors to diagnose unless you’re having an episode, and have to get to the hospital in time to prove you’re not going crazy. (also have to hope they have a specialist/dermatologist on call or you get stuck over night in the hospital and all the symptoms start going away making all test inconclusive) its an ongoing battle for me, because I’m severely anemic, therefore I can’t get my blood drawn every 6 weeks like most patients have to do. It has A LOT to do with diet and exercise, that’s something I’m still battling. I can’t and won’t drink because its a HUGE trigger for me, and same with the sun..combined the two then I’m in trouble and end up hospitalized.
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EVERY symptom and DO NOT not get discourage of what the doctors say. Second third and fourth opinions from doctors ARE okay!