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A few weeks ago, our porphyria community received bad news. The U.S. Food and Drug Administration (FDA) issued a complete response letter to Disc Medicine’s new drug application for bitopertin, an experimental oral therapy designed to treat erythropoietic protoporphyria (EPP) or X-linked protoporphyria. This means the FDA rejected…

I began experiencing symptoms of acute intermittent porphyria (AIP) in July 2020 and was diagnosed three months later. I consider my early diagnosis a blessing, as some people with porphyria wait up to 15 years for an answer. If AIP didn’t run in my family, I might not have…

Shortly after I was diagnosed with acute intermittent porphyria (AIP) in October 2020, I discovered the American Porphyria Foundation’s website, which is dedicated to supporting patients with porphyria. The site offers valuable information about the condition and its approved treatments, as well as a store featuring…

In July 2015, I decided to take on a second job to earn some extra income. After applying and being hired on the spot, I went to the job site to discuss my schedule with the supervisor, Daniel. Although I had never met or spoken to him before, I felt…

Fezzy Wezzy is a cute little kitten. Fezzy Wezzy is as soft as a mitten. Festus’ claws, however, will tear you to shreds. Festus “Fezzy Wezzy” naps with his paw in his owner’s palm. (Photo by Kalyn Shelton) One-year-old Festus “Fezzy Wezzy” is as soft as a brand-new pair…

One of my greatest heroes and mentors has always been my dad. Sadly, we are coming up on the first anniversary of his death, and I keep catching myself talking to him in my head. He was amazing, not in a loud way, but in a beautiful, quiet way. I…

Nearly 17 years ago, when my son Brady was diagnosed with erythropoietic protoporphyria (EPP), I fell to the floor in a puddle of fear. How would my little boy avoid the sun for the rest of his life? There were no easy answers, and there certainly were no easy…

When my son Brady was diagnosed with erythropoietic protoporphyria in 2009, I had no idea that my extended family would grow to include so many people affected by all types of porphyria. Over the years, I’ve learned more than I ever imagined about these diseases, as well as the…

Porphyria attacks can be triggered by a number of factors, which may vary depending on the individual and the type of porphyria. For instance, people with acute hepatic porphyria (AHP) are often advised to avoid alcohol, smoking, physical or emotional stress, and certain medications, which may trigger a life-threatening…

When living with a rare disorder, it is crucial to understand what is happening within your body. This not only allows you to recognize when your symptoms are about to flare, but it can also ensure you get proper and timely treatment. I was diagnosed with porphyria in October…