this post was submitted on 27 Dec 2023
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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.