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Porphyria News

Porphyria News is a digital news publication dedicated to offering comprehensive daily news coverage of Porphyria.

05/02/2025

A real-world study analyzed the medical records of EPP and XLP patients in the U.S. who waited about three years for a porphyria diagnosis. https://buff.ly/413wejG

30/01/2025

As a 30-year-old post-hysterectomy, columnist Kalyn Shelton can still feel out of order when she can't plan for her AIP attacks. https://buff.ly/3Er6kNM

29/01/2025

People with PCT may be at a higher risk of experiencing heart attacks, blood clot-related complications, and other cardiovascular conditions. https://buff.ly/4hCPVo6

28/01/2025

In celebrating the United Porphyrias Association's birthday, columnist Kristen Wheeden reflects on all the organization has accomplished. https://buff.ly/3Cv6T8N

22/01/2025

A 17-year-old girl was eventually diagnosed with AIP after episodes of abdominal pain, gastrointestinal issues, and seizure-like activity. https://buff.ly/4jnS60j

16/01/2025

Columnist Kalyn Shelton talks with her husband, Daniel, about what it's like to have a wife who's sick with acute intermittent porphyria. https://buff.ly/3Wl505t

15/01/2025

In interviews, acute hepatic porphyria patients in the U.S. and Europe said they were 'very satisfied' with approved AHP therapy Givlaari. https://buff.ly/4hbvyxK

08/01/2025

A newborn boy with low muscle tone, and breathing and feeding problems received an ALAD deficiency porphyria diagnosis after genetic testing. https://bit.ly/3DWKQbj

18/12/2024

A treatment to block the ABCG2 protein in red blood cells prevented light-induced skin damage in erythropoietic protoporphyria (EPP) mice. https://bit.ly/4fjAfo0

11/12/2024

In a real-world study, Givlaari was found effective in preventing acute attacks in AIP patients typically excluded from clinical trials. https://bit.ly/4it7xUz

04/12/2024

A 34-year-old woman with PCT had previously undiagnosed hereditary hemochromatosis, which played a key role in the condition's development. https://buff.ly/4ihy0Er

28/11/2024

Columnist Kalyn Shelton has faced many challenges because of AIP, but through it all, she's found an inner strength she didn't know she had. https://buff.ly/499aaXa

27/11/2024

An online health education program significantly reduced acute attacks and improved health in acute intermittent porphyria (AIP), per a study. https://buff.ly/3Zs0cwM

26/11/2024

Columnist Kristen Wheeden has a self-tested suggestion for the porphyria community: Find the silver lining amid life with the disease. https://buff.ly/41nVzFN

20/11/2024

Abdominal pain accompanied by nausea and vomiting, and a red-brownish urine could be indicative of AHP, physicians write in a case report. https://buff.ly/4eGjfbp

13/11/2024

Levels of certain bile acids may serve as a biological marker of disease severity in people with acute intermittent porphyria, a study says. https://buff.ly/40K025e

06/11/2024

The incidence of liver cancer is highest among adults with AHPs who are older, female, symptomatic, and diagnosed with AIP, an analysis found. https://buff.ly/3NV9Z83

30/10/2024

The case showcases the need to consider AIP when diagnosing acute nerve damage as Parsonage-Turner syndrome, the report's researchers said. https://buff.ly/4f0seVC

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