Living Rare, Speaking Loud — Hollie Amadio

Some people measure their lives in milestones like birthdays, promotions, and weddings. I’ve come to measure mine in disease attacks — the kind that hijack my body, rewrite my plans, and make me feel…

I want to be all in. Every meeting, every bill, every story, every Capitol Hill Day, every chance to speak up for people like me — I want to show up for all…

Somewhere between the medication alarms, unexpected flares, everyday symptoms, and insurance denial letters, I forgot how to breathe. It didn’t happen overnight. Burnout crept in slowly, disguised as survival. I was still getting up every…

This column is the second in a series of interviews with a mother, a daughter, and a spouse about each one’s hereditary angioedema advocacy journey. Read part one. The road to advocacy…

This column is the first in a series of interviews with a mother, a daughter, and a spouse about each one’s hereditary angioedema advocacy journey. In today’s healthcare environment, advocacy has never been…

Some days, I wake up and immediately feel the weight of my own body, as if my bones are made of lead. Other days, I wake up with my mind racing before I’ve even…

Rare Disease Week on Capitol Hill is now behind us, and I had the honor of participating this year with the U.S. Hereditary Angioedema Association (HAEA) and EveryLife Foundation’s Rare Disease Legislative…

Motherhood is a beautiful, chaotic, and deeply fulfilling journey. It’s also filled with worry. We fret over our children’s scraped knees, their first heartbreaks, and whether we’re doing enough to prepare them for the…

For those of us in the rare disease community, battling health insurance companies is not just a story we’ve heard; it’s a reality we live. Denials for lifesaving treatments, endless waits for approvals,…

Living with chronic illness can be profoundly isolating. The physical pain, emotional strain, and constant misunderstanding from the world around us can often leave us feeling that no one truly gets it. But within…

At 17, Hollie Amadio began a nine-year search for answers before being diagnosed with hereditary angioedema. Now, she’s an advocate, fighting for faster diagnoses and greater awareness.