Living Rare, Speaking Loud
— Hollie Amadio

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Hollie Amadio was diagnosed with angioedema at 25 after first showing symptoms at 16. She was then later diagnosed with multiple sclerosis as a comorbidity. Hollie is passionate about legislative changes and patient advocacy. Living near Washington D.C., she has become a dedicated voice for those often unheard. Through her writing, she aims to raise awareness, advocate for rare disease communities, provide crucial resources, and drive meaningful change for those facing similar challenges in their health journeys.

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Using my voice to advocate has brought me places I never expected

I did not become an advocate because I felt powerful. I became one because I had felt powerless too many times. For years, I sat in exam rooms without knowing I could question what I was being told. I accepted that unexplained swelling, severe abdominal attacks, hospitalizations, and no…

Hollie Amadio

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Voices for change in a village of rare disease advocates, part 2

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…

Columns

Voices for change in a village of rare disease advocates, part 1

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…

Columns

How I’m enduring my dual battles of body and mind

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…

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Making our voices heard for Rare Disease Week and beyond

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…

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The guilt of genetics: A mother’s struggle with hereditary illness

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…

Columns

Absurd insurance battles are costly for those with rare conditions

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…

Columns

From isolation to community: The power of connection

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 that loneliness lies a transformative truth: Community changes everything. When we connect with others who…


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