Author Archives: Claire Richmond

How I Avoid the ‘Sick Olympics’

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…

What We Get for Staying Sick and Victimized

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…

This Rare Disease Day, Only Share Your Story if You’re Ready

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…

Staying in Bed Doesn’t Mean I’m Lazy

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,…

It’s Time to Rewrite the Definition of Porphyria Pain

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…

How I’ve Rethought New Year’s Resolutions

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.

I Will Listen to My Body This Holiday Season

The holidays are a tricky time for people living with chronic illnesses like acute hepatic porphyria (AHP). My body doesn’t do well with added stress and anxiety. I spent Thanksgiving in an acute attack, and didn’t handle it well. I sat down for meals with both sides of the…