Selina's Story:
My name is Selina. I am 23 years old and was diagnosed with NF when I was 9 years old. I have all of the usual signs of NF, knocked knees, freckles in the armpits and groin area as well as about 60 cafe-au-lait spots. In addition I have at least 40 neurofibromas ranging in size from 2-10 inches diameter, with new ones appearing just about everyday. Additionally, I have tumors on my brain, spine and both lungs. I've had two major surgeries so far and am scheduled to have another one in the very near future. And just like adding insult to injury, when I was 16 years old, shortly after my second surgery I learned that I had a brain abnormality that could begin to affect the way that I functioned in everyday life. Later I was told that I would never have children.For a while, my condition seemed to be getting better. For a very short while, just before I graduated high school, my many symptoms returned. I was once again getting uncontrollable headaches, dizzy spells and fainting spells. My memory was greatly affected. By the grace of God, I graduated high school and went on to college. However, in my third year of college, my condition became increasingly more difficult. In May of '98, I learned that I was pregnant. My pregnancy was a very difficult one. I was constantly sick. I gave birth to a beautiful baby girl in January of '99. Several months later, the pain from my tumors became unbearable. After yet another MRI (I've had at least 75) I learned that I had a new tumor. This one affected my left arm.
My next surgery will be one that will result in the loss of use of my left hand, possibly even my whole arm. IN addition, I am rapidly loosing sight in my left eye and hearing in my left ear. I'm trying to remain positive. However, this dreadful disease has caused me to have to quit a job that I loved. (I worked with children) as well having to quit school less than a year before receiving my degree. I am hoping that after this surgery that I can at least go back to school. But right now, my biggest concern is whether or not my daughter will inherit this condition. I am always willing to lend an ear so feel free to write.
My email address is Penguin7599@aol.com
Thanks, Selina
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Selina / Added April 2000