Columns

Picture this: I was soaking in the panorama of emerald mountain peaks framing the blue waters of Lake Amatitlán in Guatemala, where my friend and her groom were kicking off their wedding festivities with friends, food, and music. The event was exceptional, but I was feeling off. An unease had…

Since undergoing a heart transplant in September 2020, and after almost 23 years of enzyme replacement therapy to treat my Fabry disease, I have been enjoying relatively good health. My transplanted heart is in great shape. My kidney function has improved significantly. My lung function has returned to a…

In March, I was blessed to go on a mission with my 81-year-old mother, my 14-year-old daughter, Marisa, and two other moms and their girls. We arrived in the stunningly beautiful Costa Rica and spent a week in a small village nestled in the mountains, where we visited the homebound,…

Two friends and I recently left the warmth of Texas to brave the snow and freezing temperatures of Kansas, where the three of us have sons at Benedictine College. The campus hosts a mother-son (and father-daughter) event, with a cocktail hour, a fine dinner, and a dance. It was a…

My son Anthony, who’s a senior in college majoring in accounting, recently told me, “I would’ve chosen to go to medical school if I didn’t think I had a short life expectancy.” His words stopped me in my tracks. Anthony is one of my three children who are living…

Like many American homes in January, our household is working to change habits. We’ve decided to take on the challenge of purging our diets of sugar, gluten, and highly processed foods. At the moment, four of us in the house are prepared to embrace clean eating, but only one of…

In a portion of the population with Fabry disease (FD), strokes and transient ischemic attacks (stroke-like symptoms that last only a short time) are a common manifestation of the disease. As a Fabry patient, the potential for stroke is scary. In 2011, a cousin of mine who had FD…

I grew up in a missionary family, and we were constantly moving. By the time I was in the fourth grade, we’d lived in six different countries. Moving around the world, experiencing new cultures, and interacting with all kinds of people were formative for me. I love travel, adventure, and…

Fabry disease can be an indirect cause of cancer after a transplant. I’m an example of that possibility. After my 2020 heart transplant at Duke University Medical Center, I was told that my risk of developing cancer was higher. The organ transplant antirejection medications I must take…

My oldest sons, twins Michael and Anthony, have Fabry disease. Their symptoms have been present since childhood, but back then, we didn’t know that Fabry was the culprit. The boys’ health issues became more pronounced during their tumultuous teen years, leading to genetic testing for our…