I have always been the type of person to go out of my way to make sure I don’t inconvenience others. Raised to stand on my own two feet, I prefer not to impose my feelings or needs on anyone else. But I have learned in the past year that…
Columns
Fabber. Have you ever heard that term? It’s used to describe those with Fabry disease. I recently spent a weekend with my family and fellow “Fabbers.” I had many takeaways from this family camp weekend, but one of the highlights was…
I was amazed by all of the support available to us at the beginning of our treatment journey. We received phone calls to make sure we were managing our appointments and insurance paperwork. We got reminder emails and envelopes full of information in the mail. Our doctor and nurse…
The Start of the Journey
Welcome to Morgan Yontz’s “Chronically Caring,” a new Fabry Disease News column. The first step I first learned of Fabry disease when my aunt tested positive after years of suffering without diagnosis. The diagnosis was bittersweet for her. She finally had validation that something major was causing her so many…
Recent Posts
- 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
- New monthly dosing of Elfabrio approved in EU for some Fabry patients