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?
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.
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?
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.
PCT and menopause
Question: Can starting menopause make PCT worse/relapse? (because phlebotomies are a treatment and if you stop having periods maybe iron builds up?)
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?