They say you never truly know what someone else is going through until you walk a mile in their shoes.
Let’s rewind to when I was growing up. Whenever I exerted myself through exercise or was sick with a fever (even a low-grade one), I had pain in my hands and feet. We had no idea what Fabry disease was. Neither did any of the doctors my mom took me to. I still remember the quizzical looks on their faces as I tried to describe the pain and burning sensations.
Our bodies were made to sweat. When we overheat, sweating helps us cool down. However, because of my inability to sweat, I overheated during gym class in junior high. I was unaware that ice-cold water could regulate my temperature, so I would run to the girl’s bathroom and sit on the floor. It was the only place I knew of that would cool me down. My hands and feet felt like they were on fire, and the bathroom floor was wonderfully cool.
Looking back, I can only imagine the helplessness my mom must have felt as she tried to figure out my symptoms. Now that I’m a mom with kids who have Fabry disease, I’m walking in her shoes. I feel helpless. It is gut-wrenching and frustrating to see your little ones, whom you are supposed to protect and care for, in pain.
The difference between my shoes and my mom’s shoes is big. We know what causes Fabry symptoms. Most of my kids’ doctors aren’t very familiar with the disease, but at least we know what it is. We have a diagnosis, and we have so many fantastic professionals who are researching and learning about it. We know there are resources available and experts in the field we can turn to for advice.
Great mystery still surrounds Fabry disease. We need to learn and grow, and research is crucial. But I know why my kids cry about the pain in their hands and feet. I know that water, electrolytes, and pain relievers may help. Treatment is available.
I am thankful that although I’m walking in similar shoes as those who have gone before me, they are not the same shoes. My shoes bring hope, in the form of research into the treatment and a cure of Fabry disease.
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 Services, and are intended to spark discussion about issues pertaining to Fabry disease.