Columns

I grew up in a musical family. Because my mother was a voice teacher, piano prodigy, and arranger, and because my father is a first tenor (who recently retired from directing his choir after 50 years), my sister and I grew up in an environment where music was always…

Jewish Disabilities Awareness, Acceptance, and Inclusion Month is a thing? Who knew? I didn’t until very recently. I’ve been involved in the Jewish community for many years, even before my conversion. But I only recently found out about this special month now that I’ve become more involved in the…

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…

“It doesn’t seem that big to me,” I said before I had another bite of my food. Recently, after we wrapped production at my job, our team decided to celebrate a long week of filming with a quick meal. During one of our conversations, we started discussing the…

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…

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…