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.

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…

Learning About Fabry Disease Is Like Learning a Foreign Language

In 2003, when I attended the U.S. Food and Drug Administration (FDA) meeting that would determine whether to approve Fabrazyme (agalsidase beta), which became the first approved treatment developed specifically for Fabry disease in the U.S., I was given an opportunity to make comments to the decision-making panel. Having…

Managing Fabry Disease Requires Me to Put Mind Over Matter

Throughout my life, I’ve often put mind over matter to cope with the manifestations of my multisystem disease. I used this mindset during my 27-year military career to meet the rigorous physical demands of military life while managing Fabry symptoms, including: heart disease kidney disease lung disease chronic pain (small…

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…