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…
Fabry: A Road Less Traveled – a Column by Jerry Walter
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
- Fabry Awareness Month focuses on community, strength, and support
- Finding my tribe at FSIG’s recent Fabry community get-together
- New monthly dosing of Elfabrio approved in EU for some Fabry patients
- Understanding the significance of lyso-Gb3 in Fabry disease
- FDA grants orphan designation to new Fabry cell therapy GT-GLA-S03
- Sangamo seeks accelerated US approval of gene therapy for Fabry
- Common Fabry symptoms often mimic IBS in adults
- Two of my sons share what it’s like having three siblings with Fabry
- Idorsia outlines new Phase 3 program for lucerastat in Fabry disease
- Jeff’s Journey With Fabry Disease