Spotlight Porphyria
Welcome to Spotlight Porphyria where we feature all things porphyria! Including:
Porphyria Voices shares experiences, insights, and advice from the porphyria community.
What's UP Doc? Where porphyria experts take your questions.
Summing UP explains the latest research in easy-to-understand summaries
Meet your experts and advocates where we meet the people changing the world for porphyria.
…and more!
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Acute porphyria and liver health
Question: My daughter (now age 26) has AIP. How will acute porphyria attacks impact her liver as she ages? She was diagnosed a few years ago and her last attack was several months ago.
EPP and porphyrin damage
Question: We know that extra porphyrins are what makes the skin hurt when my son has an EPP reaction but are they doing any damage on the inside of the body?
Planning for an attack
Question: I was diagnosed with acute intermittent porphyria about two years ago. I’m always worried about my next attack. What plan should I have in place in the event of another attack? At what point do you think I shouldn’t try to go it alone without help?