Columns

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 24, 2020March 23, 2020

For My Daughter on Her Birthday

Chronically Caring – a Column by Morgan Yontz, Columns

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 ... 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 25, 2020February 24, 2020

Rare Disease Day Means Finding Strength in Community

Chronically Caring – a Column by Morgan Yontz, Columns

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 ... 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 28, 2020January 24, 2020

I’m Learning to Let People In

Chronically Caring – a Column by Morgan Yontz, 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 ... 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 17, 2019December 13, 2019

Facing Fears About Fabry After a Hospital Admission

Chronically Caring – a Column by Morgan Yontz, Columns

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 ... Read more