Patrick Muls's Story

Patrick Muls


Hey! I’m Patrick from Belgium. I was born in 1958. I got diagnosed with GT when I was still an infant. This has influenced my life ever since. No dangerous sports like football (soccer) or so. As the son of a fighter pilot, I also wanted to fly jets but knew that dream would never come true. So my parents steered me towards studying so I wouldn’t have to work in a physically demanding job, but one that involved my brain and an office instead. So I became a computer programmer.

During my childhood, I suffered principally from gum and nosebleeds and bruising. In 1976, 2 days before coming to the USA for its bicentennial, I had an accident with my bike and had to wear my sunglasses all my stay to camouflage my ‘blue’ eyes and face. The custom officer even asked if my parents treated me badly. When I was 18, there was still conscription in our country. Although we told them about my having GT and showed the doctors’ conclusions, I still had to report to the military hospital for evaluation. So one day a quarter before noon, two medics came to time my clotting time. They said they’d punch my earlobe and time it for how long it would bleed. I asked them if they were sure to do that then because they would miss their lunch. But they laughed and proceeded. Can you blame me for still gloating when they gave up after missing their lunch hour? I had several blood transfusions and prolonged stays in the hospital. I also took, and take, lots of iron pills (LosFerron).

But as I grew older, my symptoms seemed to become less severe. When I had to have my wisdom teeth removed, it was done in the hospital, supervised by a professor that follows GT patients in Belgium. Nowadays, I mostly have a problem with gum bleedings, to my wife’s despair, and sometimes a nosebleed. In 2021 I had severe anemia, which needed four transfusions. While searching for the cause, they discovered a problem with my heart, and I had a stent implanted. This was done via a vein in my wrist, but there was no problem inserting it and stemming the wound. Since then, I started sports (running, walking, biking) again and lost 20% of my weight.

I have lived a rather everyday life, with more carefulness in what I do. But GT didn’t restrict me too much. Every year there is a meeting of all the persons treated by the department of that professor for GT, hemophilia, and other blood-related diseases. For the first time in my life, I got to meet other people with GT there, even three at the same time. Now finding your foundation, I feel less alone.

Two men named Patrick walking in a park with backpacks.

I have lived a rather everyday life, with more carefulness in what I do. But GT didn’t restrict me too much.

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