Claire Richmond,  —

Claire Richmond was diagnosed with acute intermittent porphyria in 2017 after living with unexplained pain for 19 years. She was 32 years old and quickly learned there’s no guidebook for incorporating a strange rare disease into her life. When she could no longer work full time, she struggled to find her purpose. That’s when she began to write. Claire hopes speaking her truth will build connections and generate hope. She lives in Des Moines, Iowa, with her family and rescue poodle.

Articles by Claire Richmond

Pain and Me: Defining the Relationship

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)…

An Undiagnosed Diseases Expert Shares Her Perspective

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…

I Live With Acute Porphyria, and I Am Tired

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…

Facing Discrimination With an Invisible Illness

I was already emotional before I checked in at the nurse’s station. More than a week into a severe acute porphyria attack, I needed urgent hospital intervention. My body was weak and my mind was disoriented. Luckily, the direct admission orders from my hematologist allowed me to bypass the…