Columns

August 19, 2020August 14, 2020

Managing Fabry Disease Requires a Balancing Act

Columns, Fabry: A Road Less Traveled – a Column by Jerry Walter

Everyone performs their own balancing act to navigate the many facets of their lives. Most people have competing interests and needs of one kind or another. Finding the middle ... 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 22, 2020July 14, 2020

Fabry Disease: A Road Less Traveled

Columns, Fabry: A Road Less Traveled – a Column by Jerry Walter

For my introductory Fabry Disease News column, I’d like to share a little about me and my journey with Fabry disease. Just over 40 years ago, in 1979, Fabry ... 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 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