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I was finally diagnosed with hereditary angioedema (HAE) about two years ago. I have type 3, meaning my C1 esterase inhibitor levels are normal. It wasn’t until my daughter Leah was diagnosed with HAE type 2 in 2019 that I began investigating my own symptoms. Not only do we…

“We don’t really care if they can’t read,” the post on Threads read. “Just make sure they have basic self-help skills.” The sentiment was from a kindergarten teacher trying to calm a worried parent because the parent was concerned their kid hadn’t quite mastered their letters. Soon, other kindergarten and…

Living with hereditary angioedema (HAE) can be interesting at times. There are the standard and obvious symptoms, the most common being internal and external swelling. Then there are the non-swelling symptoms, such as dizziness, hives, nausea, and more. Learning the individual triggers can help us better understand these…

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,…