Columns

The presentation began and I found my seat. Looking around the meeting room, I knew that every single person was there because of a shared interest in my rare disease. Mind blown. Thanks to a scholarship from the National Organization for Rare Disorders’ Rare Disease Educational Support Program, I…

I have a confession to make. I’ve read the “Twilight” saga. Yes, even the “Eclipse” novella about the newborn vampire army. I’ve watched all of “Buffy the Vampire Slayer,” as well as the spinoff series, “Angel,” and also “True Blood.” When pop culture flipped the vampire trope from…

The U.S. healthcare system is good at helping people in crisis get over the hump. But what if your disease is chronic? What if your life is the hump? Four years ago, I was diagnosed with acute hepatic porphyria (AHP). I was in a severe disease state and had…

I had a short-lived, yet severe, acute hepatic porphyria (AHP) attack in mid-September. Like a descending tornado, it came on fast, grew in intensity, and demolished everything in its path. Before surrendering to the funnel’s pull, I had to do something I both hate and dread: bail on loved…

I run late. I sleep in. I am a slow processor. I only have so much control over my pain and fatigue day to day, and it’s been like this for years. I am so over feeling guilty about it. Before chronic illness, I worked full time as a communications…

Well, I finally did it. I started Givlaari (givosiran). Since my diagnosis in 2017, the development of this new treatment was all anyone in the acute hepatic porphyria (AHP) community could talk about. Finally, here was a medication that doesn’t just prevent acute attacks, but may improve chronic…

Pain is a part of life. For me and an estimated 50 million people in the United States, it’s part of daily life. I’ve been in chronic pain since age 13. Its onset was likely due to a variety of factors, including a bad acute hepatic porphyria (AHP)…

My 19-year journey to an acute hepatic porphyria (AHP) diagnosis was fraught with misdiagnoses and traumatic misunderstandings. Sadly, it is not a unique story within the rare community. This column is dedicated to those with mysterious symptoms, who are in the thick of searching for answers. Don’t…

Outfit planning has always been an event for me. I think it started with wanting to be just like Melissa Joan Hart’s character in “Clarissa Explains It All.” When the show first aired on Nickelodeon, I was a timid and bookish 7-year-old. Clarissa Darling quickly became a role model.

I can describe chronic fatigue, but it’s impossible to understand unless you’ve experienced it. It’s feeling exhausted from your morning shower; it’s falling asleep every time you crack open a book; it’s feeling too weak to pick up the watering can in the garden; it’s feeling more tired after a…