Before being diagnosed with hereditary angioedema (HAE) in 2019 at age 17, my adopted daughter, Leah, received several other rare diagnoses, none of which had any real targeted treatment. They caused symptoms, such as migraine, and other systemic reactions. One diagnosis was postural orthostatic tachycardia syndrome, which was…
Columns
Math and I were not friends. During my elementary school years, I didn’t always have a natural aptitude for math. Whenever I talk about it, I often joke that since I’m a “creative” and creativity isn’t an exact science, a subject like math can be a headache solely because there’s…
Peyton Manning: Whether football fans like his teams or not, most of them will acknowledge he’s one of the greatest quarterbacks to ever play in the NFL. I am one of those fans, but I never had a favorite team as much as I had a favorite quarterback. While I…
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…
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…
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