Living Rare, Speaking Loud — Hollie Amadio

Banner for Hollie Amadio's column "Living Rare, Speaking Loud"

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.

Featured Post
Columns

Rare Disease Week is an opportunity to show that rare is not invisible

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…

Hollie Amadio

Columns

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…


Explore More Columns