People Twitter

4979 readers

1654 users here now

People tweeting stuff. We allow tweets from anyone.

RULES:

Mark NSFW content.
No doxxing people.
Must be a tweet or similar
No bullying.
Be excellent to each other.

founded 1 year ago

MODERATORS

SendMeYourTaTas@sh.itjust.works

pelespirit@sh.itjust.works

1147

Oddly consistent (lemmy.world)

submitted 8 months ago by Stamets@lemmy.world to c/whitepeopletwitter@sh.itjust.works

103 comments fedilink hide all child comments

you are viewing a single comment's thread
view the rest of the comments

[–] breakfastburrito@sh.itjust.works 5 points 8 months ago* (last edited 8 months ago) (1 children)

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.

[–] eyes@lemmy.world 9 points 8 months ago

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.