Neurofibromatosis By: Simone Winters

WHAT IS IT?? Is a genetic disorder that cause tumor to grow in the nervous system. These disorder cause tumor to grow on nerves and produce other abnormalities such as skin change and bon e deformities. There are three types: TYPE 1(NF1) cause the skin changes and deformed bones and usually start at birth. Type 2: cause hearing loses, ringing in the ears , and poor balance if often start in the teen years. Schwamomatosis –cause intense pain it is the least of the three

Is there any treatment??? There is no cure treatment is aimed at controlling symptoms . Depending on the type of disorder and how bad it is. Treatment may include surgery it often recommended to remove the tumors some hf1 tumors.

diagnosis It could be made by neurologist, geneticist, or developmental pediatrician. Six or more flat areas of hyper pigmentation on the skin. These spots usually appear by 2 years of age and increase in number over time.

prognosis Most patient live a normal lives, because most cases symptoms are mild. It all depend on which one do you have nf1 or nf2. many people have a normal live and have to take therapy and other canceling

The symptom!!!! Colored, raised spots(color part of the eye) Fracture of the long bones of the leg on the early childhood Freckling in arm pits , groin , or underneath the breast in women. Large tumors under the skin, can put pressure an nearby nerves or organs Soft tumors on the skin or deeply in the body

One great story Neurofibromatosis 1 by Jennifer, 14 I was diagnosed with NF1 when I was 12. When I first found out I was really upset about it. NF1 affects one out of 3,000 people. There was no family history of it. Why was it me? At that time I found myself always saying ‘why me? Out of 3,000 people why did I have to be the chosen one?’ I often cried myself to sleep as I thought I was different to other people and people will see me differently. I would always look into the mirror and stare at the spots around my body. It hurt me to think that I would never be able to wear a bikini or revealing clothing. Everyday is getting better NF can also affect growth so I am much shorter than the rest of my friends. Though I always smile and laugh when they called me “Shorty”, it actually really hurts inside to know that I may never be able to grow to the average height. Finding out that I have NF1 has caused a major change in my life. I haven’t entirely accepted the fact that I have this disorder yet but everyday is getting better and I am beginning to feel more normal around people. I have begun to look at it in a more positive way. Now I think to myself: "Everyone is different and no one is perfect. Having a disorder doesn’t make it any different to any one else. It just makes me even more special!" This story may have been edited by Children First for Health for editorial and confidentiality reasons only.