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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I Would Choose You, Every Time
Going into our marriage, I knew there would be struggles. Not just the typical marriage struggles, but the kind where I would stand by his side through every surgery, every pain, every blister, every sore. I knew there would be days where I’d help button his pants, put on his shoes and socks, cut up his food, open things for him, and so much more. I went into this marriage knowing I wasn’t just becoming his wife — I was also becoming a caretaker.
Aida's Art: Painting Through Porphyria with Strength and Purpose
Read how Aida uses art to navigate life with Congenital Erythropyietic Porphyria (CEP). Discover her portraits of Jason Momoa and Jack Sparrow, and learn how painting gives her courage, purpose, and a voice.
Safe Summer Travel with Cutaneous Porphyria: Sun-Avoidance Strategies That Work
Need to avoid the sun? Your fellow porphyria patients share their best tips and tricks for making the most of summer holidays when you have a cutaneous porphyria.
Spring Sun Safety: Essential Sun Protection Tips for Cutaneous Porphyria Patients
Discover science-backed sun protection strategies for cutaneous porphyria (EPP, VP, PCT, CEP & HCP) this spring. Learn about UPF clothing, safe sunscreens, and smart sunlight avoidance techniques.