Columns

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…

Our family’s first experience at a U.S. Hereditary Angioedema Association (HAEA) conference was amazing! I must admit that I’m usually a bit wary of large organizations with major sponsorships, just because I’m sometimes skeptical about potential biases. However, I was pleasantly surprised — and thrilled — by my experience at…

Last in a series. Read parts one and two. In rare disease advocacy, the voices we often hear belong to patients — those who live with the condition every day. But there is another group standing just as firmly behind them: caregivers. Their role is vital,…

Confession time: I love food, especially sweets! They’re not good for me, though, or probably most people. Living with hereditary angioedema (HAE), as I do, is difficult, and having to watch what I eat is an added challenge. The 1970s was the boom era for convenience, and I was…

This column is the second in a series of interviews with a mother, a daughter, and a spouse about each one’s hereditary angioedema advocacy journey. Read part one. The road to advocacy rarely looks the same twice. For some, it begins with a diagnosis. For others, it starts…

As a child of the 1980s, I can’t help but remember the “bumbling dad” trope that seemed to dominate the entertainment industry. There were movies like “Mr. Mom” and “Three Men and a Baby,” television shows like “My Two Dads,” “The Hogan Family,” and “Full House,” and a weird collection…

I was diagnosed with hereditary angioedema (HAE) in 2023. I have what is sometimes called type 3, or HAE with normal C1 levels. I take a daily maintenance medication, Orladeyo (berotralstat), which has been amazing from the first trial dose. I also have a backup rescue medication…