this post was submitted on 27 Dec 2023
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Happened to me when I was 18. I had severe Sun Poisoning (extreme allergic reaction to moderate sunburn) and not only was I inconceivably itchy, the pain I experienced was indescribable. Waves of pain so bad THROUGH MY ENTIRE BODY I could only scream and cry. I was shaking and incoherent. My mom was with me the whole day, and was the one who brought me to the hospital. Of course, with my behavior as extreme as it was, the hospital staff let me suffer very loudly in the emergency waiting room because they thought I was a drug addict. My mom, who has worked as a nurse, spent about an hour chewing people out left and right about the situation. I eventually got treated but that was probably the most traumatic experience I've gone through my whole life
Is that EPP? My partner's childhood best friend has one of the worst EPP reactions known to medical literature. I can't imagine anything that sounds half as bad.
I have this and this is maybe the first time I’ve heard of someone else with epp. I think mine is pretty mild, but it really sucks! I hate the sun!
Edit since I guess this is kinda relevant to discussion: I never had visible symptoms, just pain and extreme sensitivity to temperature /sun when it flares up, so until I was ~16 people told me I was making it up. Finally got a rash at one point and was able to get tests done and was diagnosed.
Our friend had a similar story to yours, they were told they were making it up despite the fact they were starting to die anytime they went out in the sun, it took multiple near death experiences for them to get diagnosed as a child. I've never run into anyone else with it in the UK but there is a community of expats with it in Rotterdam the Netherlands as they have one of the best Porphyria treatment and research centers in the world. Our friend emigration their a while ago for it and has been using the new implant that's been developed and they've said it's completely life changing - it doubles their exposure time and allows them to live a much more normal life. If you'd like to make contact with other people with it, feel free to DM me your email and I can pass it along.