Fabry: A Road Less Traveled
— Jerry Walter

symptoms
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.

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Columns

How I’m working to mitigate the risk of stroke with Fabry disease

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…

Columns

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…

Columns

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…

Columns

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…

Columns

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…

Columns

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…

Columns

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…

Columns

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…


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