Columns

Illness can be challenging to navigate. When we miss work or school, we may feel the need to share at least some information. However, when an illness becomes chronic, we may feel even more obligated to further explain its impact on our life. In revealing the complications, we probably aren’t…

It’s one of Kristen Wiig’s most memorable “Saturday Night Live” characters and probably one of her most relatable. During her seven-year tenure as a cast member on the show, Wiig popularized a hilarious and slightly annoying character named Penelope. The sketches’ premise was pretty simple: During a seemingly innocuous gathering,…

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…

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 and a friend were playing tennis. As I sat with her on a bench amid freshly mown grass, I looked down and…

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…