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…
Fabry: A Road Less Traveled – a Column by Jerry Walter
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…
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…
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…
Recent Posts
- New Fabry disease nanomedicine takes two-pronged approach in cells
- New Fabry gene therapy may work better than others in development
- SGLT2 inhibitors show promise for heart health in Fabry: Study
- Making strides toward greater Fabry disease awareness
- Monthly Elfabrio treatment keeps Fabry disease stable for 5 years
- Fabry disease is an obstacle I’ve worked all my life to overcome
- Fabry newborn screening test misses girls, study shows
- Despite disease symptoms, long delays seen for a Fabry diagnosis in children
- Fabry Awareness Month focuses on community, strength, and support
- Finding my tribe at FSIG’s recent Fabry community get-together