The heaviness of a shorter life expectancy due to Fabry disease

My son Anthony, who’s a senior in college majoring in accounting, recently told me, “I would’ve chosen to go to medical school if I didn’t think I had a short life expectancy.” His words stopped me in my tracks.

Anthony is one of my three children who are living with Fabry disease, and I’ve been diagnosed with it as well. He said he had to weigh the idea of accumulating debt and spending precious years of his life in medical school with the possibility of an untimely end. He made this big life decision based on his concern about how many years he had ahead of him.

Meanwhile, I had no idea that this was weighing on him.

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February 3, 2021 Columns by Jerry Walter

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For many Fabry patients, the risk of premature death brings with it a sense of heaviness. Not all patients feel the ponderousness of a shorter life expectancy; I know I don’t. Still, it’s a reality that can be burdensome.

If I could go back to the beginning of our Fabry story, I’d be more attentive and careful not to sow fear of death. My kids must’ve heard me say over and over that our disease is progressive, irreversible, and can lead to organ failure.

Of course, I couldn’t completely shelter them from the facts. My sons were in the room when a doctor asked about our family history and eliminated the possibility of my dad having Fabry disease because he was still alive at 78. What was going through their young minds? What could I have done differently to build a future full of hope?

It left a lasting impression on us the first time we heard about Fabry disease, in 2019. As the shock wave of the diagnosis reverberated around the room where Anthony sat on an exam table, the dermatologist reached behind him for a textbook on a shelf. The doctor opened the book to a picture of angiokeratomas clustered in a person’s navel, pointed out how it was an exact match to Anthony’s case, and then proceeded to describe Fabry disease.

The grim data in the doctor’s textbook suggested that men with Fabry had a life expectancy somewhere between their late 20s and late 40s. More current data that we found online, published in 2009, said that the life expectancy for men with Fabry was 58 years. Either way, it was bad news.

Yes, there has been plenty of good news since then. New treatment options are available, research and awareness are growing, and the possibility of gene therapy or even a cure may be on the horizon. Being optimistic by nature, I like to focus on the good news; the idea that my children with Fabry could have fewer years than their peers was buried deep in my subconscious.

I guess Anthony’s comment gave me a bit of a wake-up call. I don’t have all the answers, but I realize we must find a balance between recognizing the heaviness of a shorter life expectancy and hoping that medical advances will prolong and save lives.

Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Fabry disease.