Columns

Dallas residents are all talking about the unrelenting heat this year, as we’ve logged 52 days over 100 F. Besides the physical effects of bone-dry lawns, cracking foundations, and blistering-hot sidewalks, there are scary yet less visible effects of the heat wave on public health. Local officials warn…

I live six hours away from Cajun country, where my family line is rooted. I miss the lush greens of southern Louisiana, the comfort food, and most of all, the people I love so dearly. On July 3, my daughter and I were driving there when I saw a message…

When I learned of our family’s first Fabry disease diagnosis on an August afternoon in 2019, I recall a sudden surge of energy and purpose as I walked from the doctor’s office to my car. I was on a mission. Distractions melted away, and I got to work connecting…

Receiving a medical diagnosis can change a person’s life in ways that go far beyond the physical symptoms of a disease. Whether the diagnosis is common or rare, chronic or progressive, the emotional and psychological impact can be profound. For many people, the journey after diagnosis becomes not only a…

There is a story that brings 5 million visitors each year to a hamlet nestled in the foothills of the majestic Pyrenees. Lourdes, France, has a population of only about 15,000, but massive crowds of pilgrims have flooded the town since 1858, when news spread of an apparition…

Because having Fabry disease means unexpected things often happen to me, I always have fresh topics to write about. Recently, I’ve experienced several odd occurrences. While I was asleep on the night of April 23, I felt a severe pain in my right calf and heel. Half awake,…

Fabry Disease News kicked off April’s Fabry Awareness Month with an article explaining the purpose of the month and how our community can get involved. One way to participate was by joining a virtual run/walk fundraiser hosted by the Fabry Support & Information Group (FSIG). Neighbors gather for…

Note: This column describes the author’s own thoughts about Fabry disease treatment. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Like most boys and men with classic Fabry disease, I do not perspire when my body gets hot from strenuous…

I was met with warm and welcoming smiles when I walked into a boutique hotel near Dallas, Texas, for the recent Fabry Support & Information Group (FSIG) Get Together. There, I spotted a familiar face standing next to a display table. It was Nancy Ngotho, the senior patient education…

Every 10 to 11 days, I receive an infusion of one of the two enzyme replacement therapies (ERTs) approved in the U.S. to treat Fabry disease (FD). This is a little more frequent than usual, as most patients receive ERT every two weeks. November 2026 will mark 24 years…