“My body just locked up and I collapsed,” Matthew Nawn recalled. Known for its difficulty, the Boston Marathon winds through eight different cities and towns across 26.2 miles. With over 30,000 participants each year and an average finishing rate of 84%, the annual race is not for the average runner.
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While I cope with hereditary angioedema, Ehlers-Danlos syndrome, and other conditions, I’ve also been touched by a less rare condition that’s not a disease: autism. The first time I learned about autism, I was in college studying for my education degree. I took a psychology course that mentioned…
“Did someone lock the door?” It was a common question we’d hear whenever we got into the car. My father was meticulous about ensuring that the front door of our home was always locked. Although we lived in a great neighborhood, our house sat on a large corner, providing ample…
Four members of my immediate family have multiple types of angioedema. Three of us have hereditary angioedema (HAE) and require only maintenance medication to treat it, and we rarely use rescue medications for breakthrough attacks. When a symptom crops up, we take time to do a self-analysis…
Some days, I wake up and immediately feel the weight of my own body, as if my bones are made of lead. Other days, I wake up with my mind racing before I’ve even had the chance to open my eyes. Living with hereditary angioedema (HAE) and multiple…
“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…
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…
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