LETTERS: FAMILY LEARNS A LOT ABOUT NF AFTER DIAGNOSIS

To the editor:

May is NF awareness month. What is NF? That is the question we asked when our daughter, Mia, was 9 months old. NF stands for neurofibromatosis, a genetic disorder. When Mia's pediatrician explained to us that what we thought were birthmarks were possibly a sign of NF, we were asking many questions.

Since we do not have a family history of the genetic disorder, how could Mia have this?

It is a very difficult learning process. We were sent to Cardinal Glennon Children's Hospital to find out if the birthmarks, which are called cafe au lait spots, were what her pediatrician had suspected. She was right. Our daughter was officially diagnosed with neurofibromatosis Type I in February.

She got it from what they call a new mutation. She is the first person in our family with this genetic disorder. There are many genetic disorders out there, but until you are personally touched by one, you do not realize the importance of research to find a cure.

One in 3,000 people have Type I, which can consist of neurofibromas, cafe au lait spots, developmental delay and affected nerves. Type II affects about one in 40,000 people and has more serious effects. NF is a time-will-tell disease. Doctors cannot predict the severity of its manifestations.

We have also learned that many people have never heard of NF. Since May is NF Awareness Month, we felt we should do something to bring awareness of this genetic disorder.

JEFF, MICHELLE, TYLER and MIA SCHWETTMAN

Scott City, Mo.