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…
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…
The age of 17 is a time when life should be full of possibilities and new beginnings. But for me, it marked the start of a health battle that took nine long years to name. Living in a group home after giving birth to my daughter six months earlier, I…
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