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.
The Holidays Look Different When You Live With Porphyria
The holiday season can be joyful but physically and emotionally challenging for people living with porphyria. In this powerful personal story, Kalyn Shelton shares how the holidays impact daily life with porphyria and offers honest reflections, coping strategies, and hope for patients and families across all types of porphyria.
Finding Strength in Small Steps: A Patient's Guide to Recovery from Paralysis
Maria Paula Galvis, an AIP patient from Colombia, shares her heartfelt advice on recovering from paralysis. Learn how to cultivate the right mindset, celebrate small wins, and listen to your body during rehabilitation.
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.
Theme Parks and Porphyria: Sean’s Story of Flexibility, Fun, and Flare-Ups at Universal
UPA Ambassador Sean Albright shares his experience visiting Universal Studios while managing Variegate Porphyria. From smart prep to a sudden flare, Sean shows how adapting plans can still lead to a great time.
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.
When Accolades Fade: Discovering True Worth Through Porphyria
A powerful personal journey of living with acute intermittent porphyria (AIP)—and discovering true worth beyond accolades. If porphyria has changed your life, this story is for you.
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.
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.