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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Mental Health in the Porphyrias
This study involved focus groups with porphyria patients to explore the emotional and psychological challenges they face. Participants discussed their lived experiences, shared coping strategies, and offered recommendations for additional support to improve their quality of life.
Porphyria and Menopause
Question: How will menopause affect my porphyria? Are estrogen treatments for menopause safe?
The EPP Impact Questionnaire
Having a standardized questionnaire tool is important to evaluate and demonstrate the effectiveness and impact of new treatments for EPP. Regulators like the FDA consider improvements in quality of life, along with other factors, when deciding whether to approve new treatments.
This research developed a questionnaire called the EPP Impact Questionnaire or EPIQ.
Meet Craig Leppert, Shadow Jumpers Founder
I realized that my condition with the sun was either going to define my life or become a cool addition to the story of my life
Live: Cutaneous Porphyrias Bonus Questions
Dr. Bruce Wang answers the questions about cutaneous porphyrias that we didn't get to in the Facebook Live Q&A on February 24, 2024.
EPP/XLP Consensus Guidelines
This article provides guidelines for the diagnosis, treatment and management of erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP).
Meet Kristen Wheeden, UPA President
Collaboration between patients, caregivers, advocates, expert physicians, industry partners and regulators is necessary to realize advancements in porphyria. All of us doing our important roles can lead to better diagnostics, new therapies and better quality of life for our patient community
Patient Day Feature: EPP & XLP Guidelines with Dr. Amy Dickey
The diagnosis and treatment of rare conditions like EPP and XLP can be confusing for doctors and patients alike. Join Dr. Amy Dickey as she walks us through the recommendations from the new consensus guidelines for diagnosing and managing protoporphyrias.
Surgery precautions and cutaneous porphyrias
Question: I am having a planned laparoscopic surgery next week. Should there be a filter on the light on the laparoscope? If so, would you be able to tell me what filter would need to be used? Can you also tell me what filters would be needed for the surgery lights in the operating room?
EPP/XLP Liver Guidelines
Liver dysfunction is a rare but very real possibility for people with EPP and XLP. These guidelines provide recommendations for the diagnosis, monitoring and treatment of liver-related dysfunction in protoporphyrias (EPP and XLP).
Light-Related Skin Symptoms in EPP
This research describes some important features of EPP including prodromal (warning) symptoms, a priming effect from previous light exposure, and lack of visible symptoms among many patients.
Global Porphyria Day: Live April 19, 2023
In a special livestream for Global Porphyria Day 2023. UPA's own Kristen Wheeden and Porphyria Expert Dr. Bruce Wang answered your questions! Recording is now available.
Dr. Wang, Live: February 18, 2023
Check out this recording of UPA's Kristen Wheeden and Porphyria Expert Dr. Bruce Wang as they answered your porphyria questions live.
Protoporphyria Guidelines
Question: Are there guidelines for managing erythropoietic protoporphyria (EPP) and x-linked porphyria (XLP)?
EPP and bone health
Question: I’ve heard that vitamin d deficiency can cause osteoporosis, and that sunlight is the main way you get vitamin D. If you have to stay out of the sun to avoid a reaction, what are things you can do to keep your bones strong?
How many people have porphyria
Question: I understand that Porphyria is a rare disease and being recently diagnosed with AIP, I am trying to understand more and more. How many people in the US have porphyria? Which type of porphyria is the most common? The least common? How do you calculate these numbers?
Porphyrias Consortium
What is the Porphyrias Consortium? Why is it so important? What do they do?
Making a health care team
Question: Can you recommend a list of specialties for acute porphyria patients, and a list of specialties for cutaneous porphyria patients?
EPP and iron supplements
Question: A lot of EPP patients are confused about taking iron supplements. What would you suggest?