THIS IS MY STORY

By Mack Maxwell



        I was born on April 9, 1964. My early years were normal, except for the photophobia. I can remember photophobia since I was 4 years old. At age 6, while in first grade, the slow growth became noticeable. I was about a head shorter than other classmates at the time. It took a while to determine a correct diagnosis in the early 70s. Several doctors misdiagnosed my condition as diabetes. Finally, at approximately 8 years of age, doctors referred me to Dr Harrison in Baltimore, Md. Dr Harrison made the cystinosis diagnosis. By this time, the photophobia was getting worse, but there was not any other pain in the eyes yet. My growth had practically stopped by this time. We were informed that an eventual kidney transplant would be necessary.

        The year before my transplant I became very weak. At the time of my transplant , I was 3'11 and 39 lbs. Luckily, I only had to go through 3 weeks of dialysis before my transplant. The kidney transplant was performed on June 10, 1975 by Dr. Paul Peters.

        There has never been a problem with my transplanted kidney. However, throughout the years my photophobia got worse. By high school, the photophobia was accompanied with severe pain, at times. This would include swollen eyes, which until September, 1999 I thought were severe allergies. I would also have itchy eyes and it would feel like there was a sand-like substance in them. The eyes were the only problem I had. I was lucky enough to catch up on a lot of my growth and ended up at 5'3". I have been very active all my life. During my teen years, I ran in several 5K runs and also played baseball.

        One of the best days of my life happened in June of 1999. I was surfing on Yahoo, and decided to use the keyword "cystinosis" for a search. The first site I found was by Robert Lepard and it gave me all the information I needed. It was that night in which I first became aware of the miracle drug which would finally conquer my lifelong eye pain. I contacted Jean Hotz and told her about my problem. Jean invited me to the San Diego Cystinosis convention, which I attended. I finally met other people with cystinosis, along with some great doctors. During the convention, we all were presented with the latest in cystinosis research.

        My first visit to the NIH was in September of 1999. During the time at NIH, I had the opportunity to meet with Dr. Gahl and Dr. Kaiser. Dr. Kaiser gave me the Cysteamine eyedrops which instantly eliminated my pain and changed my life. Dr. Gahl put me on Cystagon, in order to prevent future damage from Cystinosis.

        I graduated from the University of Texas at Arlington in August, 1986 with a B.S. in Information Systems. Professionally, I have been a programmer analyst since graduating from college.

         Currently, I work out at least 3 days a week. I do some running, work out with weights, and I play racquetball. I am also a big sports fan, especially football. My other hobby is traveling, which I try to do as much as I can.






Mack Maxwell     

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