At the age of 9 months, I was diagnosed with Cystinosis. At the time, my symptoms were vomiting, dehydration, slow growth and loss of weight. My parents took me to the hospital and at first the doctors thought I had Juvenile Diabetes, but one of the doctors noticed I had Fanconi Syndrome. To be certain that I had Cystinosis they did a blood analysis and sent it to San Diego, California. Definitely the results demonstrated that I had Cystinosis. The doctors said there was a treatment for Cystinosis, but I would need to go to San Diego to obtain it.
At the age of 3 yrs I started to take lcysteaminea,
until the age of 8 yrs in 1989. At that age, they started giving me
Ifosfocysteaminei, but on my last visit to the Cystinosis Conference they did
some studies of Lcysteaminei and Dr. Snyder said I needed a transplant since I
already had a 4.5 level of cystine.
On October 21, 1992 at 11 year of
age, I had the transplant. I was a very difficult situation since prior to my
surgery I had a low count of hemoglobin. I weighed 11 kilos and I was very
weak. My father was the organ donor. Thank God the operation was successful.
That day changed my life, since I started to grow and gained 22 kilos. I had
the energy to do a lot of things. I felt very good and after the transplant I
continued to take Ifosfocysteaminei and 2 years later started taking Cystagon.
During 5 years I started playing on a soccer team and tried to maintain
a normal life. I studied until the 6th grade and took computer courses. I also
had a goal to study English and to this day, I continue to learn English. Right
now I am 19 years old, I am working with my parents and I have lots of friends
who understand my situation. I love going to parties and love to dance. I go
out with my friends to the movies or to dinner and I always take my eye drops,
Cystagon and Breathe Assure. Three years ago, on my first visit to Washington,
D.C., I had a lot of problems with my eyesight. I always had to wear dark
lenses. mistakenly hit my eye, I could not see for 2 days since I felt as if
the crystals were hooked in my eyes. They could not do my eye studies due to
???? and the crystals in my eyes. They started giving me Cystamine eye drops
and those helped me a lot. Now I can manage and walk on the street without
using dark lenses.
Every two years I have a general checkup in
Washington D.C. at the National Institute of Health. This year I am making
plans to go to Las Vegas for the Cystinosis Conference. I am looking for
airfare promotions, ( I mean prices not so high, since my economic situation in
Mexico is very difficult). I hope to see you all and talk to all of you soon. I
hope that most of you write to me and comment on my story. There is someone I
want to thank for giving me the opportunity to feel well. I thank God and my
parents.
By: Victor Gomez
victore18@hotmail.com