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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…

While we all make decisions in our lives, it’s important to think through the consequences of the most significant ones, especially when they involve our health and the COVID-19 pandemic. Living with Fabry disease, a rare and potentially life-threatening disorder, has made many of my decisions more challenging and complex.

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…

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…

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…

I never imagined my first episode of irregular heartbeats, or arrhythmias, in the late 1970s would lead to getting a heart transplant decades later. When I had my first episode, I didn’t know I had Fabry disease. I also didn’t know that as a male with classic Fabry…

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…

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 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…

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…