Columns

Rare diseases usually don’t play nice with each other. They can land those of us who have them in a catch-22 scenario where it feels like we lose no matter what. I am one of many in this oh-so-lucky club of multiple rare diseases. I’ve been part of the…

Several members of my family live with angioedema. My eldest daughter, Aria, has allergic angioedema; my son Dorian has hereditary angioedema (HAE) type 1; my adopted daughter, Leah, has HAE type 2; and I have HAE type 3, or HAE with normal C1-INH. On top of angioedema, we…

This column will be a little different from the ones I usually write. Normally, I’ll start with a story that celebrates the underdog, the person who had to come from behind to achieve a victory. By the end, I’ll have tied the tale neatly into our hereditary angioedema journey with…

I was recently asked how hereditary angioedema (HAE) affects me mentally and emotionally. That’s a big question! HAE affects everything that contributes to my mental health — my family, my work and social relationships, my physical health and illnesses (both chronic and acute), stress, diet, exercise, rest, and my…

One of the amazing perks of the organization I work for is that it often partners with the theater production company I own. Prior to the director’s tenure there, I’d been commissioned to produce many plays for him over the last 14 years. So, when he started this new position…

Way back in middle school, I had my first big travel experience when my parents took us to Hawaii to celebrate their 25th anniversary. Then, in high school, I went on a class trip to England, and my love for travel was solidified. After being a stay-at-home mom of four…

“I have a very serious question to ask you both,” our youngest son, whom we lovingly nicknamed Harambe, said as he entered our room. My husband and I paused our random wind-down tasks and gave him our full attention. “There’s a couple that’s going to a park,” Harambe began. “They…

Our family has found immense comfort and support within the rare disease community. While many of our health conditions are inherited, others, such as my chronic Lyme disease and long COVID-19, were acquired. All of them, though, can be classified as invisible disabilities, including hereditary angioedema (HAE). Although my…

Adult me would love to go back in time and stop the moment, but 7-year-old me was determined to snap what I thought was the most hilarious picture of my parents. During the summer of my eighth birthday, my parents took my sister and me to Walt Disney World. This…

Last in a series. Read part one. In the first part of this series, I shared how I compiled all of my daughter Leah’s personal health information (PHI) on the road to her diagnoses. Over the years, that morphed into keeping track of my family’s data as well. We…