Why Fabry Disease Is Like Walking On a Treadmill

A friend asked me to explain what it felt like to have Fabry disease. How do you describe a rare genetic disease that impacts each patient differently? I explained that we do not sweat, our extremities have poor circulation, and changes in temperature could trigger extreme pain crisis. Still, these symptoms are just part of what it is like with Fabry’s.

When chronic illness is due to a genetic disease that is vascular, walking through your day is different. My children’s days are different too. It’s like walking on a treadmill. In our world, each of us walks on a different treadmill every day.

My oldest son’s treadmill is probably the one Olympic athlete trains on. It is on a steep incline and requires a lot of muscle to push through the day.

My younger son’s treadmill is less steep — or that is how it appears to me. He is extremely good at pushing that treadmill hard and getting it to move at a running pace.

My treadmill is set at a mid-level incline. It changes daily, like all of our treadmills do. Mine is the one that changes the most, depending on the demands of parenthood and on being the parent with a genetic disease. Those are the days when my treadmill is set on a steep incline and I am climbing all day. Of course, there are also days when I don’t have to get on my treadmill at all. Writing or drawing or reading a book does not involve any kind of treadmill. I have had Fabry’s disease for my entire life, and at 51, I have learned how to accommodate and keep myself comfortable.

My children do not have the luxury of accommodation. They must go to school and then follow up with homework. They are young and anxious to keep up with their friends in every way they can. The modern world and the internet has helped tremendously with easing their time spent on their treadmills. Awareness and understanding from the adults and friends in their lives has helped lessen their treadmill levels too. Truly, awareness is the key to all of our treadmill levels.

The fact that one disease can impact three people so differently is always so startling to me. We are all goal-oriented people. Our bar is set high. We do not let Fabry disease define who we are; instead, we live our lives and try not to let it slow us down anymore than necessary. Like everyone with a chronic disease, we try to live our lives with our treadmill set on “normal.” I am a true believer that with the help of science and medicine, we will achieve that goal one day. I hope it will be in my lifetime.

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Getty Images photo via FedotovAnatoly