Fabry: A Road Less Traveled
— Jerry Walter

For several years before I had a heart transplant in September 2020, I’d become progressively weaker, more fatigued, and out of breath. Like many others with Fabry disease, I had heart, kidney, and lung disease, and…

The manifestations of my Fabry disease are much improved and now stable after more than 21 years of enzyme replacement therapy, as well as a heart transplant I had in late 2020. But Fabry continues to…

Sharing my experiences with Fabry disease and spreading awareness of the condition are top priorities for me. Since Fabry disease was first described in 1898, researchers and advocates have worked to achieve a better understanding of the…

I haven’t read any medical literature indicating that Fabry disease weakens the immune system, but most post-transplant medications do. Many people with Fabry have organ failure and thus need kidney or heart transplants.   The antirejection medications…

My inspiration for writing about Fabry disease pain this month came from the graphic representation of pain shown below. Neuropathic pain is a common manifestation of Fabry that is studied and written about frequently, but this illustration…

This week, I turned 69 years old. As a man with classic Fabry disease, I consider this achievement both significant and unexpected. I’m still getting used to the idea that living this long is possible for people like…

This month, my niece Katrina posted a happy birthday message on Facebook to her daughter, Isabella, my grandniece who turned 8 years old this month. Katrina describes her as sweet, spunky, and stubborn. I’m not surprised to hear she’s…

Two upcoming gatherings are reminders about the importance — and availability — of Fabry disease information for those like me who live with the condition. First up is the 13th annual Fabry Family Education Conference, set for…

I’ve been receiving biweekly infusions of enzyme replacement therapy for Fabry disease for over 20 years, and I had a heart transplant in September 2020. With these two amazing gifts, almost all my Fabry symptoms have…

One evening in mid-2008, my wife, Angela, and I were watching television at home and saw an advertisement about Victory Junction, a camp in Randleman, North Carolina. The camp has a race car theme in honor of the…

Fabry disease (FD) is a genetic condition caused by variants in the GLA gene. This gene instructs the body to produce the alpha-galactosidase A (alpha-Gal A) enzyme, which is necessary for the body to function properly. Low…