The seven-day Porphyria Awareness Week campaign kicks off May 12 to spread the word about porphyria and culminates with Global Porphyria Day on May 18, a Sunday. The theme of this year’s observance is “Think Porphyria,” according to the American Porphyria Foundation, which is joining forces with…
Liver disease, a potential complication of erythropoietic protoporphyria (EPP), may increase healthcare needs, raise disease burden, and negatively impact mental health, according to a new study by U.S. scientists based on self-reported data from patients. People with liver disease also said that their EPP had a greater impact on…
Sometimes hope feels heavy. In the past several months, the porphyria community lost several beautiful souls. They were different in age, type of porphyria, and geography, but all were taken too soon. As I sit at my desk at the United Porphyrias Association office (where I serve…
I’m a fifth-generation porphyria warrior, and the generational curse ended with me in February 2021. That month, I had what’s called a bilateral salpingectomy, the surgical removal of my fallopian tubes, to prevent me from getting pregnant. Although it wasn’t an easy decision, it had to be done. In…
Acute hepatic porphyria (AHP) is more commonly seen in women in Denmark, with acute intermittent porphyria (AIP) the the most frequent subtype. That’s according to a recent study that also found that patients with high levels of porphobilinogen, a porphyrin precursor that builds up to toxic levels in AHP…
People with acute intermittent porphyria (AIP) often consume large amounts of simple sugars and fats, which may contribute to metabolic problems, such as being overweight or having high levels of bad cholesterol in their blood, a study reports. “Our study provided valuable insights into the metabolic aspects of AIP,…
A woman in her 20s was diagnosed with acute hepatic porphyria (AHP) after experiencing seizures and visual hallucinations due to a condition known as PRES, or unilateral posterior reversible encephalopathy syndrome — which causes swelling in one side of the brain — and muscle weakness due to neuropathy, or…
Two siblings with a rare form of variegate porphyria (VP) who had skin lesions caused by light or sun exposure and neurodevelopmental symptoms were described in a study from Germany that also reviewed all the other cases in the literature until 2023. Both had epileptic seizures, developmental delays, and…
Everyone seems so very excited for spring. The birds are chirping, tree buds are sprouting, and the sun hangs hotter and higher in the sky for longer stretches each day. Well, almost everyone. Right on cue, this is when Shadow Jumpers — as we lovingly call our people living…
Note: This column describes the author’s own experiences with etonogestrel implantation. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. My arm was laid out to the side as my then fiancé and now husband, Daniel, held my hand. “Are…
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