“You can tell everything you need to know about a man by the way he shakes your hand. Eye contact and a firm grip show trust and respect. You can count on that person.” I have held on to my dad’s advice for 27 years now, and while I’ve found…
Columns
I love my job! It is hard to adequately express how blessed I feel to be part of the porphyria community, to lead the United Porphyrias Association, and to advocate on behalf of patients and caregivers. I get to connect with expert physicians, support patients, curate meaningful…
Note: This column describes the author’s experiences with various medications and therapies. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Dear diary, I am frustrated. I am tired. I don’t feel good. I am 31 years old, but I am…
Throughout our lives, we make daily decisions. Some are minor, like what to wear or eat, while others can significantly impact our future. For those of us living with acute intermittent porphyria (AIP), even small choices become crucial. Beyond major decisions, such as undergoing a bilateral salpingectomy and a…
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…
Recent Posts
- Lack of skin symptoms for woman leads to variegate porphyria ‘blind spot’
- Because of AIP, I’m no longer the dependable person I once was
- During acute AIP attacks, high levels seen for 2 compounds in urine: Study
- Advocating for porphyria treatment has both roses and thorns
- Teen with AIP develops seizures, rare brain condition in case report
- I am a blessed porphyria warrior who is AIP, or accepting it positively
- Rare clot in AIP case tied to symptoms resembling flare, study finds
- Porphyria seen in familial Mediterranean fever patients: Study
- Liver transplant was ‘Trojan horse’ for baby’s variegate porphyria