and neurofibromatosis is not a disease.
This is what I keep being told by my daughter's genetic doctor who is awesomely sensitive to children and how this condition is perceived. So I comply and it does make sense. If you have a child with neurofibromatosis you should understand that using the word "tumor" can cause your child to grow very self-conscious. I intend not to do that so I describe the spots as "freckles".
I have been receiving some hits recently on my NF tag and figured it was time for a more recent post about NF. First of all, if your child or someone you know was diagnosed with NF then realize that you are not alone. There are many people with this condition. It is not a disease. It is rare to die from it though you do want to be informed and aware of several things.
First, you should be seeing a genetic specialist who deals with NF patients. You should also be seeing an opthalmologist since NF can affect the optic nerve. NF is a condition that affects the nerve endings and therefore, there is a slight risk that the optic nerve is an area where fibromas can grow. A basic opthalmological exam is fine with children ages 6 and under. When the child reaches ages 6-8 you might want to consider a CAT scan to check the area behind the optic nerve. Check with your doctor and discuss options.
There is a website to go to for more information. Click here.
Understand that your child or loved one is not different or handicapped. They just have a defective gene. I call it the crazy gene. And stop by my blog every now and then to check on my princess because you will be happy to hear about how she leads a very wonderful, happy and typical 4 year old's life. I couldn't have asked for more.
If you need someone to talk to about NF, feel free to email me at mill2542 at bellsouth dot com.