Columns

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…

“We should plant these flowers,” my husband suggested. Since we were both experiencing the rare phenomenon of a simultaneous day off, we decided to tackle a project that had long been evading us. The flower bed that hugs our front porch had become overrun with weeds, crabgrass, and a failed…

This column is the first in a series of interviews with a mother, a daughter, and a spouse about each one’s hereditary angioedema advocacy journey. In today’s healthcare environment, advocacy has never been more critical. While politics often complicate conversations around healthcare, one truth remains: People living with rare…

It never fails. Around this time of year, it’s not unusual for everyone’s cellphone in our house to emit that piercing sound to alert us of an emergency notification. And the emergency? Severe weather in our area. Residents of northern Alabama, where I live, are used to hunkering down during…

I was superexcited to hear that this year’s US Hereditary Angioedema Association summit is in Baltimore, as that’s my husband’s hometown. His family still lives in that area, and given his mother’s decline, we were planning a trip back east sometime soon anyway. Even though my daughter Leah and…

Being a parent is never easy. I should know, as I have eight children. I have four biological children from my first marriage, three stepchildren from my second marriage, and one adopted daughter. Two of my bio kids, my adopted daughter, and I all live with angioedema. Being a…