Being diagnosed with Fabry disease turned my world upside down. Finding ways to cope and accept my new life, as well as that of my son, was crucial. Reminding myself of all that I still have has given me the strength to stay happy and to fight to be…
Columns
They say you never truly know what someone else is going through until you walk a mile in their shoes. Let’s rewind to when I was growing up. Whenever I exerted myself through exercise or was sick with a fever (even a low-grade one), I had…
Learning to Make My Voice Heard
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…
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
- Canada approves ERT Elfabrio for adults with Fabry disease
- I work hard to influence my health outcome with Fabry disease
- Canadian study highlights stroke danger for young adults with Fabry
- Fabry treatment ST-920 boosts kidney, heart function in trial
- Echocardiograms may spot early heart disease in Fabry, study finds
- In rare case, woman diagnosed with both Fabry and blood disorder
- Companies challenge EMA advice rejecting monthly Elfabrio dosing
- ERT may protect heart function after Fabry kidney failure
- Helping my children with Fabry find ways to combat depression
- EU agency urges against monthly dosing plan for Fabry drug Elfabrio