Porphyria News

1 week ago | porphyrianews.com | Marisa Wexler

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 other organizations in the Global Porphyria Advocacy Coalition to raise awareness about the disease.

2 weeks ago | porphyrianews.com | Kristen Wheeden

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 as president), looking at the bulletin board behind my computer where I keep pictures of our fallen members, their faces stare back at me. Alongside too many others. I know their names. I know their stories.

3 weeks ago | porphyrianews.com | Andrea Lobo

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 patients, in the urine were more likely to develop AHP symptoms, but not to be hospitalized or require treatment. “This study provides information on the Danish population of patients with AHP.

1 month ago | porphyrianews.com | Marisa Wexler |Kalyn N Shelton |Steve Bryson |Marta C. Figueiredo

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, revealing improper dietary habits that may predispose patients to additional pathologies [health problems],” the researchers wrote.

1 month ago | porphyrianews.com | Margarida Maia |Andrea Lobo

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 nerve damage, according to a case study.