The Fabry Files – a Column by Eunice White

October 7, 2020October 5, 2020

The Challenges of Parenting With Fabry Disease

Columns, The Fabry Files - a Column by Eunice White

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, ... Read more

August 5, 2020August 3, 2020

My Daughter Is My Hero

Columns, The Fabry Files - a Column by Eunice White

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, ... Read more

July 17, 2020July 15, 2020

A Look at Fabry Through My Daughter’s Eyes

Columns, The Fabry Files - a Column by Eunice White

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 ... Read more

June 10, 2020June 8, 2020

How to Beat the Summer Heat

Columns, The Fabry Files - a Column by Eunice White

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 ... Read more

May 6, 2020May 4, 2020

I Always Have Something to Be Thankful For

Columns, The Fabry Files - a Column by Eunice White

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 ... Read more

April 15, 2020April 13, 2020

COVID-19 Didn’t Cancel Fabry Disease Awareness Month

Columns, The Fabry Files - a Column by Eunice White

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 ... Read more

March 11, 2020March 9, 2020

In Exercise and Health, We Keep Moving Forward

Columns, The Fabry Files - a Column by Eunice White

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 ... Read more

February 5, 2020February 4, 2020

This Year, I’m Running for Rare Diseases

Columns, The Fabry Files - a Column by Eunice White

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 ... Read more

January 8, 2020January 7, 2020

How I Found My Road to Exercise

Columns, The Fabry Files - a Column by Eunice White

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 ... Read more

December 4, 2019December 2, 2019

Answering the Hard Question for Which No Parent Is Prepared

Columns, The Fabry Files - a Column by Eunice White

“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 ... Read more