Jerry's Fabry Disease Blog

Keeping the Fabry community informed

jerrywalter 200

Jerry's Fabry Disease Blog was created to spread awareness about Fabry disease, a rare genetic disorder, and to share news and information about what is happening in the Fabry community. The blog is one component of the National Fabry Disease Foundation's social networking program.

When I found out I had Fabry disease at 25 years old, the reported average age of death for an untreated male was only 41 years old. Knowing that, I changed my life. If my life was more than halfway over, I’d better start living it more intently. I left the military for the first time about a year after I learned I had Fabry disease but seven years overseas gave me an appetite for worldly travel. Another year later I was again working overseas, this time as a defense contractor in Saudi Arabia. It gave me an opportunity to travel even more. While working in Saudi Arabia, I traveled to 17 more countries bringing my total to 25 countires visited. I enjoyed experiencing many other cultures. Within 3 years of finding out I have Fabry disease, I learned to snow ski, scuba dive, and sky dive. I wanted to experience everything before I met a premature demise. By the time I was 40, I’d lived a very full life and felt comfortable leaving it prematurely if that was my fate. One of my personal quotes is “Some of the things we can always rely on are change, exceptions, and unexpected events.” My 41st birthday came and went rather uneventfully. At 48 years old in November 2002 when I started bi-weekly enzyme replacement therapy, the reported average age of death for an untreated male was revised to 50 years old. Kidney dialysis and transplants were mainly responsible for the new statistic. Fast forward to the present … after more than 12 years on bi-weekly enzyme replacement therapy, it is a routine part of my life and will likely continue to be for my remaining years. Over the years I have developed many significant symptoms of varying degrees of severity. They include a mild heart attack; an implanted pacemaker/defibrillator; chronic kidney disease stage 3 reversed back to stage 1; mildly severe lung disease/COPD; sleep apnea (possibly related to Fabry); profound and severe hearing loss in my left and right ears respectively; chronic pain: chronic fatigue; and chronic GI upset Despite all of these symptoms, I have managed to stay “relatively” healthy by the standards of having a progressive, destructive, and life-threatening genetic disorder. I have lived an amazing and unexpected long life under the circumstances. Now, at 60 years old I am successfully managing my disease with enzyme replacement therapy and several adjunct medical therapies to improve my many symptoms and to reduce my risk of decreasing lung function, heart attack, heart failure, kidney failure and stroke, as well as to improve and maintain my quality of life. In addition to the various medical interventions I focus on eating a helathy diet, exercise, getting enough sleep, and drinking more water. My cardiologist and neurologist emphsize these things as critical to my continued longevity. Here is one more original quote I like to share: "Respect your limitations but don't voluntarily limit your potential ... try everything!" Jerry Walter So looking back at the course of my life there seems to often be an upside to even the worst things in our lives. I probably wouldn’t have had all these amazing experiences without the shocking news I received 35 years ago. I have been blessed with an amazing life and amazing people to share it with. ♦