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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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).
Meet Dr. Amy Dickey
My connection to porphyria is a bit more personal than a lot of other researchers. I have EPP porphyria.
Pregnancy Outcomes with Acute Porphyrias
This research used the Swedish Porphyria Registry to compare the pregnancy health risks and outcomes for women with an acute hepatic porphyria (“AHP”- includes AIP, VP and HCP) to women without porphyria.
Annual Check ups for inactive AIP
Question: I have AIP. I haven’t had a porphyria attack for several years and I don’t have a porphyria specialist. Is there anything I should ask my doctor to check for during my annual check-up?
Meet Dr. Manisha Balwani
Seeing patients and how it impacts them day-to-day, and how their families' lives are impacted, it’s a different level of understanding.
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.
Pain in Acute Hepatic Porphyrias
This article provides an overview of the different types of pain in acute hepatic porphyria (AIP, VP, HCP, ADP) and how they may be treated.
RNA interference therapy in AHP
This article provides an overview of the current state of research and knowledge about the use of givosiran for treating acute hepatic porphyria.
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)?
Panhematin History
Question: I have been treated with Panhematin for many years – and I’m interested in learning about how Panhematin was first used. Can you share that history with me and others?
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?
Acute porphyria and kidney health
Question: I heard a doctor in a presentation say that people with porphyria should “look after their kidneys.” How do you do that?
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?)
Givlaari for acute porphyria
Question: I am thinking about starting Givlaari injections. What tests should I have done before and during my treatment?
Confusion during acute attacks
Question: I have Variegate Porphyria – why am I confused during an attack?
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?
Acute porphyrias and heart health
Question: Can having tachycardia (fast, irregular heartbeat) due to AHP cause long term health issues? If you have tachycardia from AHP, are there things you can do to protect your heart?
Porphyrias Consortium
What is the Porphyrias Consortium? Why is it so important? What do they do?