Living Rare, Speaking Loud - a Column by 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 like a prisoner and stranger in my own skin. But what about the space in between…

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 of it. That fire inside me burns hot, and it pushes me to keep going even…

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 day, still managing the house, still being Mom. But inside, I was unraveling. I wasn’t just…

Last in a series. Read parts one and two. In rare disease advocacy, the voices we often hear belong to patients — those who live with the condition every day. But there is another group standing just as firmly behind them: caregivers. Their role is vital,…

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 rarely looks the same twice. For some, it begins with a diagnosis. For others, it starts…

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 more critical. While politics often complicate conversations around healthcare, one truth remains: People living with rare…

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 had the chance to open my eyes. Living with hereditary angioedema (HAE) and multiple…

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 Advocates program. The week, which started on Feb. 24, was nothing short of incredible; it was…

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 world. But for mothers like me who live with a rare genetic illness like hereditary…

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, and hours spent on the phone advocating to get the care our doctors have already prescribed…