Columns

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…

With six seconds left on the clock, the Titans had one chance to clinch the title of the 2000 Super Bowl champions. As a student at Fisk University in Nashville, I’d quickly become a fan of the Tennessee Titans. Because the school’s campus was seven minutes from the stadium, it…

First in a series. While many doctors and healthcare systems now use digital patient portals, I find value in maintaining my family’s personal health information (PHI) independently. Keeping a physical database of our medical information is important, especially for those of us with rare and chronic illnesses. It can be…

We are all programmed in many ways: by our upbringing, our education, our faith and beliefs, our life experiences, and even our diagnoses. Changing my programming to become an empowered rare disease patient and advocate didn’t happen overnight. Long before I was diagnosed with any rare disease, including…

When stealing $150 million from some of the world’s most famous casinos, Danny Ocean knew the plan needed to be meticulous. In 2001’s iteration of “Ocean’s Eleven,” George Clooney’s character enacts revenge on one of his enemies by robbing the Bellagio, the Mirage, and the MGM Grand in Las Vegas.

A new year brings a familiar question: What now? For those of us living with a rare disease such as angioedema, the answer is rarely simple. We don’t get the luxury of clean starts or easy resolutions. What we do carry forward is knowledge. About our bodies, about the…