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Some people measure their lives in milestones like birthdays, promotions, and weddings. I’ve come to measure mine in disease attacks — the kind that hijack my body, rewrite my plans, and make me feel like a prisoner and stranger in my own skin. But what about the space in between…

Even if I’d had a smartphone, my sister would’ve been way more compelling to watch. Years ago, while my sister, Gina, was on break from medical school, our mom, dad, she, and I had to take a road trip for a family reunion. Because I was still in high school…

My adopted daughter, Leah, was diagnosed with hereditary angioedema in 2019. My son Dorian and I were subsequently diagnosed with the same condition, and my firstborn daughter, Aria, has acute allergic angioedema. Leah has other rare diagnoses, including an ultrarare genetic disease, so it’s safe to say our…

The first person in our family to be diagnosed with hereditary angioedema (HAE) was our youngest, adopted daughter, Leah, who’d been seriously ill for years. Genetic tests have since confirmed that she was born with several conditions; they became extremely pronounced once she reached puberty. Leah endured recurrent upper…

It was one of the most beautiful and respectful corrections I’d ever seen as a child. The details are fuzzy because it happened over 35 years ago, and I don’t remember the circumstances of the moment. What I do remember is that an older woman, somewhat familiar with my family,…

I want to be all in. Every meeting, every bill, every story, every Capitol Hill Day, every chance to speak up for people like me — I want to show up for all of it. That fire inside me burns hot, and it pushes me to keep going even…

Over the past eight years, my immediate family has received four angioedema diagnoses. First was my eldest daughter, Aria, who was diagnosed with allergic angioedema in 2018. Then came my adopted daughter, Leah, the following year, who has type 2 hereditary angioedema (HAE). I received a type 3 diagnosis,…

With over 35 years of experience in the performing arts, I’m often the go-to expert for theatrical presentations by corporate or nonprofit organizations. Sometimes I’m asked to write or direct major shows. Other times, however, I’m asked to conduct a script assessment. This particular request arises when a program is…

When I was younger and raising my children — years before most of my diagnoses, but while I was already living with symptoms — my morning routine was basically to hit the ground running. That has changed dramatically. Not only are my children all adults and self-sufficient, but as I…

Somewhere between the medication alarms, unexpected flares, everyday symptoms, and insurance denial letters, I forgot how to breathe. It didn’t happen overnight. Burnout crept in slowly, disguised as survival. I was still getting up every day, still managing the house, still being Mom. But inside, I was unraveling. I wasn’t just…