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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Living in the Shadows: Elsie’s Journey with Congenital Erythropoietic Porphyria
The world isn’t designed for people with rare diseases, and convincing others that we actually need the support we ask for is a battle in itself.
Understanding the Emotional Toll of Being a Caregiver for a Loved One with Porphyria
Being a caregiver is one of the most heart-wrenching and overwhelming roles a person can take on. The emotional and physical toll it exacts on both you and your loved one is often unspoken—yet, it profoundly shapes your mental and emotional landscape.
How Positive Experiences Can Exacerbate Acute Porphyria: Managing Stress and Symptoms
A few weeks ago, my husband Wilson and I celebrated our 25th wedding anniversary with a wedding vows renewal. While it was a fun and memorable celebration weekend, it left me feeling activated by the stress of it.
Living with Erythropoietic Protoporphyria (EPP): A Personal Journey
“I Have Never Seen Anyone Washing Windows in the Rain”. Before being diagnosed with EPP, my next door neighbor said these exact words to me.
Take Care and Celebrate: Adapting the Holidays to My Porphyria
Diana Escobar (AIP) shares her tips and recommendations for enjoying the festive season without compromising your health.