“I called to ask your scholarship provider,” my dad said over the phone. “They think you’re a freshman.” The problem? I was a second-semester sophomore. At the beginning of my fourth semester of undergrad studies, my father discovered that one of my scholarships hadn’t been applied to my account. The…
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Everyone gets tired sometimes. Some of us, especially when we push ourselves, become fatigued. And especially with rare diseases, many of us truly understand exhaustion. In today’s vernacular filled with sarcasm, we frequently hear people, even children, say, “I’m exhausted!” While the words are interchangeable according to Merriam-Webster, terms used…
Whether I was wrestling with theorems in unified geometry, had to remember names of capitals in geography, or was forced to memorize elements on the periodic table in science, I was never a fan of taking tests. Aside from the surprise of pop quizzes, I usually knew when a test…
Rare Disease Week on Capitol Hill is now behind us, and I had the honor of participating this year with the U.S. Hereditary Angioedema Association (HAEA) and EveryLife Foundation’s Rare Disease Legislative Advocates program. The week, which started on Feb. 24, was nothing short of incredible; it was…
“I’m sorry, you can what?” the person asked me. The question made me pause. At a dinner years ago, I found myself conversing with someone who’d seen a few of my plays. Admittedly, I was drawn to the conversation because, as a playwright, I rarely get to talk about my…
“So what are your symptoms?” is always the doctor’s first question. But which of my symptoms stem from hereditary angioedema (HAE), and which are caused by my many other health conditions? It took most of my life to get diagnosed with HAE. As a kid, I had horrible reactions…
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…
Recent Posts
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- 1 lonvo-z dose keeps most HAE patients attack-free up to 3 years
- For many of us, becoming a patient advocate wasn’t optional
- FDA extends Orladeyo approval to children as young as 2
- With chronic illness, we can’t brush off holiday stress so easily