Living Rare, Speaking Loud - a Column by Hollie Amadio

We are taught that grief is a mountain. A journey we climb. A path with a beginning, a middle, and an end. Society loves to hand us the map of the five stages of grief — a neat, organized progression where we move through denial, anger, bargaining, depression, and eventually…

Being dually eligible for both Medicare and Medicaid seems like the ultimate healthcare safety net. Two insurance programs, more coverage, and more protection sounds fantastic. But in reality, for many people living with rare and chronic diseases, dual eligibility can feel less like a safety net and more like being…

The strongest version of me almost didn’t make it — not the version people worry about, but the one they admire. The one who keeps going, keeps showing up, and keeps figuring things out no matter what’s falling apart behind the scenes. That version of me was dangerously close to…

A new year brings a familiar question: What now? For those of us living with a rare disease such as angioedema, the answer is rarely simple. We don’t get the luxury of clean starts or easy resolutions. What we do carry forward is knowledge. About our bodies, about the…

For some people, advocacy is a choice — a hobby, calling, or passion project they pick up when they have the time, energy, or interest. But for those of us living with rare diseases, chronic illnesses, and bodies that don’t follow the rules, advocacy becomes something entirely different. It becomes…

There was a time when showing up meant physically being there — at the meeting, the appointment, the event, the moment. I used to equate my physical presence with my worth. If I couldn’t show up in person, I felt like I was falling short. Chronic illness has a way…

Living with hereditary angioedema (HAE) already feels like walking a tightrope — a single misstep, one trigger, can be a flare away from losing your balance. When you add womanhood, roller-coaster hormones, and perimenopause into the mix, that tightrope suddenly feels much thinner. For “typical” women, the hormone estrogen…

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…