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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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.
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.
Urine Porphyrins for Diagnosis
Question: I think I might have Acute Intermittent Porphyria (AIP). My doctor ordered a urine porphyrin test, my porphyrins were high but then I was told that the results aren't considered diagnostic. Why not? And what tests should my doctor order?
Using AI to Diagnose Porphyria
People with symptomatic acute hepatic porphyria (AHP- includes AIP, VP and HCP) often wait about 15 years to get diagnosed, which is too long. This research used information from electronic health records (EHR) and machine learning (ML) to see if they could find people with AHP faster.
Porphyria and Menopause
Question: How will menopause affect my porphyria? Are estrogen treatments for menopause safe?
Worldwide Patient Experience of Acute Porphyrias
Up to this point, most research that has been published about AHP has focused on symptoms and care during an acute attack. This research looks at the full burden of acute hepatic porphyrias (AHP, includes AIP, HCP and VP) on patients from around the world.
Live: Acute Porphyrias Bonus Questions
Dr. Bruce Wang answers the questions about acute hepatic porphyrias that we didn't get to in the Facebook Live Q&A on February 24, 2024.
Acute hepatic porphyria and anaesthesia
Surgery and the use on anesthesia require special considerations for patients with acute hepatic porphyrias (AHP- includes AIP, VP and HCP). This article provides an overview* of precautions for the period before, during and after an operation (the ”perioperative period”) for patients with AHP.
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?
Patient Day Feature: Power Study Findings with Dr. Rebecca Karp Leaf
From chronic pain, impacts on mental health, limitations to employment, the POWER study captures the realities of living with acute hepatic porphyria from patients around the world.
Acute porphyria and liver tests
Question: If you have acute porphyria, why is it important to have your liver function checked annually? What can you do to prevent issues with your liver?
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?
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.
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?
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?
Givlaari for acute porphyria
Question: I am thinking about starting Givlaari injections. What tests should I have done before and during my treatment?