I’m writing this column on the eve of my daughter’s 13th birthday. We are six days into social distancing in an effort to help stop the spread of the coronavirus. My daughter has been excited about turning 13 since she was 2. She and I have…
Feb. 29 wasn’t just leap day, it also was Rare Disease Day. I wrote in a previous column about See Rare Run, a virtual race to raise awareness for people with rare diseases. Finally, the day had come to run for this great cause. Unfortunately,…
Being diagnosed with a chronic illness is stressful. Add to that the fact that most people, including many doctors, have never heard of many rare diseases, and the process becomes completely exhausting. I can’t tell people that I have Fabry disease and leave it at that because few have any…
New Year’s resolutions. Do you make them? Do you keep them? Are you still going strong? Or are you like the 75 to 80 percent of Americans who quit their resolutions by February? I don’t make resolutions because I believe that change can happen regardless…
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…
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