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Neurofibromatosis encompasses a set of distinct disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. NF causes tumors to grow anywhere on or in the body.
NF Type 1 occurs in 1 in every 3,000 births. It is also an autosomal dominant genetic disorder which affects more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sach's combined. Although most cases of NF1 are mild to moderate, NF can lead to disfigurement, blindness, skeletal abnormalities, dermal, brain and spinal tumors, loss of limbs and malignancies. http://www.ctf.org/
This condition affects all ages and races. I want to share with you that despite my diagnosis, I have lived a very fulfilling life. Your contribution will help in finding a cure for all the children and adults with NF and for generations to come. Additionally, your generosity will help me to continue to mentor and engage those less strong and fortunate than I am. I am excited to begin this new chapter in my life and warmly thank you for your generosity.
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I want to thank everyone for visiting this site to become more educated regarding neurofibromatosis (NF). Just over the past year or so, I have felt led to become involved in helping bring awareness to this condition and raise money for research and ultimately a cure or effective treatment. I have NF type 1 and for most of my life I have talked very little about my condition. I guess I am "coming out of the closet" so to speak. I was diagnosed with NF type 1 at the age of six. I was born with a spot on my left lower leg that the doctors told my parents to keep an eye on. This spot turned into a tumor that continues to grow despite having been debulked several times. The problem with this disease is that existing tumors keep growing and new ones form without any explanation or way to stop it. I also have a large tumor on my right elbow. Additionally, there are hundreds of neurofibromas all over my body. These look like bumps or skin tags.
