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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…

What is my job as a parent? In thinking this question through, I came up with a few answers, but it’s not an exhaustive list. I am to protect, guide, teach, and love my kids. At some point, the protection I give them will lessen. They will be…

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…

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…

I can count on one hand the number of people I consider my heroes. One of them is my 12-year-old daughter, Keziah. I interviewed her a few weeks ago, and I wonder if any of her views have changed since then. For two weeks, I…