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.