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 Adapted to Gradual Hearing Loss Due to Fabry Disease

Millions of adults around the world have hearing loss. Like me, most people have a relative who speaks loudly, turns up the volume on the television, uses closed-captioning on the TV, asks people to repeat everything, and gets close to them to hear what they’re saying. Most of those relatives…

These Resources Can Help You Spread Awareness About Fabry Disease

Because April is Fabry Disease Awareness Month, I, along with many organizations and people, help to educate patients, family members, friends, caregivers, healthcare professionals, and the broader population to improve the recognition, diagnosis, understanding, and management of Fabry disease. Since 2012, the Fabry International Network, the U.S. National Fabry Disease…

In Managing Fabry Symptoms, We Must Leave No Stone Unturned

Because Fabry disease affects multiple bodily systems, it was easy to get in the habit of managing each symptom separately, focusing on the symptom that needed the most attention at the moment. I’ve learned over time that my Fabry symptoms and my non-Fabry medical issues are often connected in ways…

I Have Fabry Disease. How Long Will I Live?

Fabry disease is a progressive, potentially life-threatening, rare, genetic disorder. Many people with Fabry disease succumb to heart disease, kidney disease, and stroke at relatively young ages. A common question asked by people diagnosed with Fabry disease is, “How long will I live?” When I first learned that I have…

I Feel Like a Cat With 9 Lives

I am a 66-year-old male with Fabry disease, which causes many adverse and potentially life-threatening symptoms. As I look back on some of my major life events, I often think about the saying, “A cat has nine lives.” I’ve had many encounters due to both Fabry disease complications and…

Having Fabry While in the Army Was Like Mixing Oil and Water

As a boy, I wasn’t aware Fabry disease caused the many physical issues I experienced, such as a reduced ability to perspire (called hypohidrosis), intolerance to hot temperatures and strenuous physical activity, pain (acroparesthesia) from small fiber neuropathy, and chronic gastrointestinal (GI) issues (mainly diarrhea). I overheated…

My Childhood Made Sense After My Diagnosis

I had a happy childhood. It was fun to grow up in a large family with six brothers and one sister, especially during the holidays. I am the third eldest. As part of a low-to-middle-income family, we all received new things occasionally, but we also made good use of hand-me-down…

Managing Fabry Disease Requires a Balancing Act

Everyone performs their own balancing act to navigate the many facets of their lives. Most people have competing interests and needs of one kind or another. Finding the middle ground to keep everything in sync can be challenging. People with complex chronic illnesses like Fabry disease seem to have more…

Fabry Disease: A Road Less Traveled

For my introductory Fabry Disease News column, I’d like to share a little about me and my journey with Fabry disease. Just over 40 years ago, in 1979, Fabry disease was discovered in my family. My mother was diagnosed with an eye exam when she was hospitalized for an unrelated…