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People in Brazil with acute hepatic porphyria (AHP) have a high prevalence of chronic symptoms and a poor quality of life, a retrospective registry study has found. This new work also reported a higher proportion of patients with recurrent attacks compared with previous studies. “Our study fortifies the knowledge…
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Anyone with acute hepatic porphyria (AHP) will tell you that attack pain is unique, severe, and undeniable. Once you have an attack, you’ll never forget how it feels. I saw a hepatologist shortly after I was diagnosed, and his words still stick with me: “You can’t run…
A woman with unexplained abdominal pain and syndrome of inappropriate antidiuretic hormone secretion (SiADH) was eventually diagnosed with acute intermittent porphyria (AIP) after initial testing and misdiagnoses, a new case study reports. In SiADH, overproduction of antidiuretic hormone (ADH) causes the kidneys to reduce filtration significantly and retain more…
Treatment with Givlaari (givosiran) normalized disease-related laboratory parameters in a 47-year-old woman with acute intermittent porphyria (AIP) but she continued to experience severe symptom attacks despite getting normal test results. “We report a patient with AIP who experienced biochemical resolution of her [disease] with monthly [Givlaari] injections yet…
Travel is exhausting for columnist Claire Richmond, who lives with a chronic illness. But for her, the benefits outweigh the downsides.
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There is no cure for porphyria yet, but there are therapies that can help manage the disease. Here you can find more information about some of the approved treatments for porphyria.
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