Fabry Disease News Columns

September 23, 2020September 23, 2020

My Childhood Made Sense After My Diagnosis

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 eldest. ... Read more

August 19, 2020August 19, 2020

Managing Fabry Disease Requires a Balancing Act

Fabry Disease News Columns

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 ground ... Read more

August 5, 2020August 6, 2020

My Daughter Is My Hero

Fabry Disease News Columns

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 ... Read more

July 22, 2020July 22, 2020

Fabry Disease: A Road Less Traveled

Fabry Disease News Columns

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 disease ... Read more

July 17, 2020July 17, 2020

A Look at Fabry Through My Daughter’s Eyes

Fabry Disease News Columns

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 ... Read more

June 10, 2020June 11, 2020

How to Beat the Summer Heat

Fabry Disease News Columns

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 ... Read more

February 5, 2020May 6, 2020

This Year, I’m Running for Rare Diseases

Fabry Disease News Columns

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 ... Read more

January 28, 2020May 6, 2020

I’m Learning to Let People In

Fabry Disease News 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 infusion ... Read more

January 8, 2020May 6, 2020

How I Found My Road to Exercise

Fabry Disease News Columns

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 ... Read more

December 17, 2019May 6, 2020

Facing Fears About Fabry After a Hospital Admission

Fabry Disease News 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 thought ... Read more

December 4, 2019May 6, 2020

Answering the Hard Question for Which No Parent Is Prepared

Fabry Disease News Columns

“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 ... Read more