Fabry: A Road Less Traveled – a Column by Jerry Walter

Jerry’s interest in Fabry disease stems from his personal experience: He has Fabry disease along with 23 immediate and extended family members, including five family members who passed away between 37 and 51 years old due to this condition. Jerry believes serving the Fabry community is what he was meant to do. After all, in addition to surviving Fabry disease, Jerry has survived two life-threatening bacterial infections, Guillain-Barre syndrome, and the September 11 attack on the Pentagon where he was an Army strategic planner. Jerry has many Fabry disease symptoms and in 2020 received a heart transplant to keep him having birthdays long into the future. Jerry was born and raised in Michigan. He has a BS degree from Michigan State University and an MS degree from Central Michigan University. He currently lives in Hillsborough, North Carolina, with his wife Angela and two dogs, Molly and Annah.

How I work to prevent infection in life post-transplant

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 we must take for the rest of our lives weaken our…

Fabry disease pain can manifest in a variety of ways

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 is unique. It was shared with me by the pharmaceutical company…

13 essential ways I stay healthy with Fabry disease

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 me, after believing that it wasn’t for most of my adult…

How to find information on Fabry disease symptoms and more

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 Sept. 20-22 in Greensboro, North Carolina. Close on its heels, Sept.

A Special Place for the Fabry Disease Community

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 late NASCAR driver Adam Petty and serves children with…

What Fabry Disease Awareness Means to Me

When I think of awareness, I think of familiarity with Fabry disease. To me, spreading awareness means providing information and enticing people to learn enough about Fabry that they can recognize the signs in themselves or people they know. Being aware of the symptoms can lead to quicker diagnoses. Additional…