John's Story:

I was about 5 years old, when I realized something was not right with me. I went to my mom, who then set me up with a doctor's appointment. What I had found out years later was, that I had precocious puberty. For the next few years I went to many specialists and hospitals across the country. They ran many tests to see why I was maturing so fast. My condition stumped the best. It was noticed that I had Scoliosis. After many many tests and one of the first CT scans in the country at that time, they found out that I had NF type 1.

I am 28 now very short for my family I stand at 5'4" while the rest of my family is around 5' 9" . Along with the scoliosis, I have vision problems. The NF I have is very mild only a few neurofibromas ( which I had a few removed last year). It was discovered that I had two masses on my left upper lung a few years ago and the doctors that I have seen seem to think that is related to my NF. I have a lot of Cafe' of Lait spots mostly on my back but on my arms and hands as well. I guess I can say I am lucky, I do not have many of the tumors and spots as most. The reason I had the spots removed were entirely cosmetic, but these tumors were large. I had three removed. the largest took 12 stitches.

I have coped pretty well. From what my parents have told me I am the only one in the family that has NF. This is all I can think of . if you have any questions I would appreciate your letters. John