Claire hopes speaking her truth builds connections and generates hope. At 32, she was diagnosed with acute hepatic porphyria (AHP) after a 19-year search for answers. As severe, unexplained pain became a focal point of life, she exiled her body to protect her mind. Through laughter and challenges, “One Thousand Flaming Swords” navigates daily life with AHP, as Claire rebuilds the bridge between her physical and mental being.
I lived with my rare disease for 19 years before finding answers. The first time I was hospitalized for an acute hepatic porphyria (AHP) attack, I was 32 and undiagnosed. Within 24 hours of admission, the floral arrangements began to arrive. Outpourings of generosity and concern came from…
Disclaimer: The opinions in this column are my own. The decision to have children is deeply personal and isn’t universally right or wrong. I am 38 and choose not to have babies because of a burdensome rare disease. I’ve decided not to risk the 50% chance of passing on a…
When it comes to treating porphyria symptoms, there are more options than prescription medication alone. Just about every patient I know who’s managed an active disease state for any length of time has a recipe of wellness-based and self-help practices to cope with pain and stress. Mine includes daily…
All types of porphyria share a hallmark symptom: horrific pain. For many of us, our illness is largely invisible. For some of us, it becomes a nearly insurmountable obstacle that dictates our lives. While I would never wish porphyria on another human, I frequently find myself wanting my loved…
Acute hepatic porphyria (AHP) is a complex rare disease that takes up a lot of brain space. Nothing is more exciting than when I can tell someone who actually understands it about how it feels, acts, and responds. Venting and story sharing are one thing. Living in perpetual…
My acute hepatic porphyria (AHP) diagnosis was a whirlwind that transformed my life and the lives of my loved ones. It took a series of dramatic attacks for doctors to take me seriously. Sadly, this is not uncommon for people with AHP. After nearly two decades searching for answers, I…
Every February, my inbox fills with information about Rare Disease Day webinars, forums, and promotions. On social media, patients and caregivers raise awareness through campaigns such as #ShowYourStripes or #ShareYourRare. In Washington, D.C., advocates from around the country gather virtually and in-person to ask their members of Congress for…
I’m a huge fan of mornings. They once stood for solid productivity. Before reporting to the office at 8 a.m., I’d have a three-mile run, meal preparation, personal email, and news headlines all checked off my list. These days I stay in bed, often until 9 or 10 a.m. Still,…
There is a general lack of understanding and awareness when it comes to pain associated with acute porphyria attacks. Porphyria pain is not well defined in research. It’s misunderstood by doctors and industry professionals, and it’s easy to see why. Pain cannot be objectively measured or seen, and…
In recent years, I’ve overhauled my idea of goal setting. A few years ago, I sat down one January to write my New Year’s resolutions in the midst of having acute porphyria attacks and filling out long-term disability applications. My pen hovered, frozen above the page. Uncertainty is stressful.
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