What is my job as a parent? In thinking this question through, I came up with a few answers, but it’s not an exhaustive list. I am to protect, guide, teach, and love my kids. At some point, the protection I give them will lessen. They will be…
I can count on one hand the number of people I consider my heroes. One of them is my 12-year-old daughter, Keziah. I interviewed her a few weeks ago, and I wonder if any of her views have changed since then. For two weeks, I…
My 12-year-old daughter was diagnosed with Fabry disease in spring 2019. Because she’s relatively new to having Fabry, I thought it’d be interesting to collect her thoughts on life with a rare disease. Me: What were your thoughts upon receiving your Fabry diagnosis?…
It is common for Fabry disease patients to complain about being heat intolerant. Because of this, summers can be challenging. One study reported by Fabry Disease News noted that nerve cell loss in sweat glands may contribute to sweating issues in Fabry patients.
As of today, my family has spent seven weeks staying at home due to the coronavirus pandemic. We are seven weeks into home schooling (with one fantastic week off for spring break), and practicing social distancing, which seemed odd at first and now has become our new normal.
I have started and stopped and restarted this column so many times that I have lost count. My brain is fuzzy, my mind can’t seem to settle, and my beloved routines are all thrown out the window due to all that is going on in the world these…
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,…
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…
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…
“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…
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