Columns

I recently started enzyme replacement therapy for Fabry disease at the children’s hospital where my son has been receiving the same treatment for a little over a year. The infusion days have been going well, aside from it taking up our entire day. However, I have struggled after…

It’s 4:45 a.m. and the alarm is sounding.  What comes to mind when you read that sentence? Maybe something like sleep, dark, too early, nighttime, must be a siren coming from outside … did I mention “early”? For me, this alarm signals the time…

In recent weeks I have had a traumatic medical experience that has affected me in ways I couldn’t have imagined. I began to feel unwell three weekends ago and thought that I had been too busy and pushed myself too hard. That Sunday, I started running a fever. Having Fabry…

“Mom, can Fabry kill you?” This wasn’t the first time this question was posed to me. The first time my child asked me, I was taken aback. It seemingly came out of the blue. So I did what all seasoned parents do: I mumbled something nonsensical…

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…

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…

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…

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…