My Childhood Made Sense After My Diagnosis
I had a happy childhood. It was fun to grow up in a large family with six brothers and one sister, especially during the holidays. I am the third eldest. As part of a low-to-middle-income family, we all received new things occasionally, but we also made good use of hand-me-down clothes, toys, and bikes. I always felt like we had everything we needed.
My parents kept us occupied and maintained their sanity by participating in activities with us. My mother taught us to play board games and card games. She taught us to weave kitchen potholders on a loom. She taught us to swim and to ice skate. Somehow, she even managed to get three of us boys to take tap-dancing lessons and perform a show in clown costumes with a few of our cousins and friends. Mom made the costumes. We really enjoyed tap-dancing but the boys didn’t talk much about it outside our tap-dancing group.
My dad became a scout leader and enrolled some of us in the Boy Scouts for a couple of years. He also became an assistant T-ball/baseball coach on some of our teams. My dad taught us to hunt and fish. Our annual family vacation was always a wilderness camping trip. Our tent was huge.
We lived in a neighborhood full of boys. We played backyard baseball, football, and other yard games. We climbed trees, built wooden and snow forts, went on hikes through the nearby forests, shoveled snow to ice skate on frozen ponds, and had snowball fights. Life was good!
Growing up with all that testosterone and competition in my family and in the neighborhood, I was challenged to keep up physically. My stature was smaller than many of the other boys. I had less stamina and it was often difficult to compete. I was always an underachiever when I was young.
I didn’t do as well as many of my brothers or friends during physical activities or school sports like football and wrestling. The team practices were tough on me. After short workout periods I was usually overheated, exhausted, beet-red in my face, and in pain. Some activities were just not meant for me.
Despite the many fun times my brothers and neighborhood friends enjoyed together, my younger years were plagued by unexplained occurrences of high fevers, overheating with strenuous activity and heat, excruciating pain in my hands and feet in very cold or hot temperatures, and chronic gastrointestinal upset (mainly abdominal pain and frequent diarrhea). I was the kid who quietly walked away from outdoor games before they were finished because I was too tired, too hot or too cold, and felt poorly. My self-esteem was low. I thought I was just a wimpy kid.
Looking back, one specific memory stands out when I think about the challenges of my youth. I experienced many episodes of unexplained, dangerously high fevers I now know were caused by Fabry disease. I remember lying on our kitchen table while my parents tried to reduce my fever by wrapping me in damp, ice-cold towels from the freezer.
It probably wouldn’t have changed their methods, but my parents didn’t realize I was also intolerant to hot and cold temperatures due to the pain and achiness they invoked. My parents were desperate to ameliorate the high fevers. So, there I was, a crying, naked, freezing kid in pain, trying to survive those traumatic ordeals.
Even though I missed more school days than any other student, I graduated from high school. My grades were poor, so I knew with all my absences, graduating was a gift.
Some of the physical issues I experienced when I was young became more tolerable for a while as I got older, but most have continued on and off throughout my life. Despite being unprepared physically, I joined the U.S. military at 18 years old, which unexpectedly led to 27 years of service. I finally retired as Colonel Jerry Walter.
At 25 years old, several years after my initial enlistment, I discovered I have Fabry disease.
My disease worsened throughout my life to cause profound hearing loss with hearing aids, moderate chronic obstructive pulmonary disease, stage 2 chronic kidney disease, and progressive heart failure with an implanted pacemaker/defibrillator, to name a few of my many Fabry symptoms.
In retrospect, my then unexplained childhood symptoms of Fabry disease included:
- chronic pain (peripheral neuropathy) and flu-like achiness
- unexplained high fevers
- intolerance to hot and cold temperatures
- hypohidrosis (reduced ability to perspire) and overheating
- recurring gastrointestinal upset
- frequent school absences
After I learned about the symptoms of my disease, many aspects of my childhood suddenly made sense to me!
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.
Excellent article totally described my grandson who is now 15 and was diagnosed about 6 years ago but totally his childhood glad to hear a story like th8s
Thank you! I'm glad your grandson was diagnosed at a young age so he can benefit the most from treatment.
OMG I thought I was seeing my life all over again. My dad always thought it was growing pains and would say suck it up. The doctor thought I had juvenile rheumatoid arthritis and prescribed epiphen 5 as far as I can remember.
Thanks for sharing Jerry!
That's a familiar story Paul. I'm happy you got diagnosed. Jerry
Kathy Jo Blue
Wonderful writing! Sounds all too familiar to my son Matt’s life growing up😢
But now we have the answers and he is working physically hard everyday. He has made adjustments to his diet and sees a natural path doctor. The combo is working!! Yay😊
Hi Kathy Joe,
I'm so glad to hear this!