Columns

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 strenuous physical activity, pain (acroparesthesia) from small fiber neuropathy, and chronic gastrointestinal (GI) issues (mainly diarrhea). I overheated…

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, guide, teach, and love my kids. At some point, the protection I give them will lessen. They will be…

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. As part of a low-to-middle-income family, we all received new things occasionally, but we also made good use of hand-me-down…

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 to keep everything in sync can be challenging. People with complex chronic illnesses like Fabry disease seem to have more…

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 I wonder if any of her views have changed since then. For two weeks, I…

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 was discovered in my family. My mother was diagnosed with an eye exam when she was hospitalized for an unrelated…

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 a rare disease.   Me: What were your thoughts upon receiving your Fabry diagnosis?…

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 loss in sweat glands may contribute to sweating issues in Fabry patients.

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 for spring break), and practicing social distancing, which seemed odd at first and now has become our new normal.

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 routines are all thrown out the window due to all that is going on in the world these…