Columns

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…

For most people, the news came as a shock. During the 2021 Tokyo Olympics, the most decorated gymnast in the world, Simone Biles, made a startling announcement. Aside from experiencing mental fatigue, she was suffering from what gymnasts refer to as “the twisties”: a dangerous condition in which an athlete…

Note: This column was updated June 13, 2025, to correct that the columnist’s daughter has vascular inflammation, rather than vein swelling. The first time I remember seeing spontaneous swelling was when my firstborn, Aria, was about 6 months old. We’d taken her to a park where her dad…

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…

For many, holidays are difficult. Family gatherings, whether you experience difficulty with the social dynamics, political differences, or touchy-feely personal-space invaders, can be overwhelming. That’s especially true for those of us who have the complications of rare disease atop everything else. Most holiday gatherings involve travel as well. Whether you’re…

What’s happening? Why can’t I fit into these pants? I just wore them last week. The waistband is so tight it’s painful! I ask my family, “Can you see how swollen I am?” I had no idea what was happening to me, other than my sense that I looked fine…

“You sound terrible,” my friend told me. She was correct. I was in my sixth week of a dry, wheezing cough. A cold I caught from one of my children quickly became an upper respiratory infection that terribly exacerbated my asthma. I was diagnosed with asthma in 2023, so I…

Hello, and welcome to my column. My name is Natalie, and I’m a 59-year-old rare disease patient, along with several of my family members. This column will focus on my most recent rare disease diagnosis: hereditary angioedema (HAE). I named my column “Dancing with Rare Disease” because in addition…

“You volunteered me to do what?” In 2016, our oldest son came home from school excited about an international festival taking place there in a few days. His class chose the country of Nepal. Students could make flags and posters or write a short essay on the country. But our…

At 17, Hollie Amadio began a nine-year search for answers before being diagnosed with hereditary angioedema. Now, she’s an advocate, fighting for faster diagnoses and greater awareness.