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Joined 2 years 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.











  • Feeling this for the last year or so. Graduated into a recession completely broke and unable to get a dev job, ended up doing admin with a side of dev work (as they found out I was “technically minded” - obviously without any extra pay) for the last 8 years to make ends meet. Quit my job in November of last year to do a coding bootcamp to update my knowledge and try again - learnt more in 4 months then I did in 3 years at university. Graduated into another recession and historic tech sector layoffs. Feels bad.