Laura's Story:

My late father always had what we thought were cysts. When I was a child I had a raised piece of soft skin the size of a dime on the side of my stomach. I am now 62. At that time when my late mother took me to the MD, he said "don't bother it if it doesn't bother you," which was the pat answer for that time.

When I was 32 I gave birth to twins, a boy and a girl. By the time they were about 7 I had to take my son to a dermatologist due to café au lait spots. I thought they were odd freckles since I have red hair and freckles. My pediatrician said they were nothing to worry about. The dermatologist said they are something to worry about and explained it to me. He also advised me that prior to my son getting married he should go to a genetic counselor who can explain it all to his fiancée.

My son is now 30, not married and currently is seeing anyone (this has nothing to do with the NF). He does date considerably. He has some café au lait spots, not a problem. He has some eruptions, not a problem. But he does have an eruption on his coccyx which is quite large and doesn't seem to bother him. All my eruptions are on the left side, front (on the side of my stomach) and on the side of my back just above my waist. According to a dermatologist at Mt. Sinai Hospital in New York City this is unique. By the way my daughter, who is married with 2 children, never had the disease, nor do her children.

Sincerely,
Laura

Laura / Added October 2000