Columns

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.

“Oh, that’s why they’re bad,” is what we’re supposed to say. The last decade has seen a rise in popularity of fictional villain origin stories. Whether it’s a segment in a movie about the hero of the story or a full feature film, many franchises have begun rewriting the history…

My screenwriting class sat in stunned silence as they stared at the picture on the screen. Finally, light chuckles filtered through the room. “Whenever you think someone has already done it,” I said to them, “remember this picture.” On the screen was the infamous meme of Dwayne “The Rock” Johnson…

There wasn’t a person on earth who knew more than I did at my 38th week of pregnancy. That’s what I thought, at least. With an incredible OB-GYN team in my city, a sister who served as my “virtual” obstetrician before that was even a thing, an overly attentive husband,…