Columns

November 19, 2020November 17, 2020

Having Fabry While in the Army Was Like Mixing Oil and Water

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

As a boy, I wasn’t aware Fabry disease caused the many physical issues I experienced, such as a reduced ability to perspire (called hypohidrosis), intolerance to hot temperatures and ... Read more

October 7, 2020November 2, 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

September 23, 2020August 22, 2020

My Childhood Made Sense After My Diagnosis

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

I had a happy childhood. It was fun to grow up in a large family with six brothers and one sister, especially during the holidays. I am the third ... Read more

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, 2020November 2, 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

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