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Joined 1 year ago
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Cake day: July 3rd, 2023

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  • 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.









  • eyes@lemmy.worldtoNo Stupid Questions@lemmy.world*Permanently Deleted*
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    7 months ago

    You body begins to die a painful but probably mercifully quick death. Hormones are vital to your bodies continual survival and even if you targeted specific ones, you’d just be creating problems for yourself. Elimated dopamine? Congrats you’ve given yourself ADHD and a host of other personality problems. Melotonin? Oops no more sleep for you, enjoy your sudden weight gain and compromised immune system. We don’t take hormones, we are hormones.