What is Neurofibromatosis?

Neurofibromatosis encompasses a set of distinct genetic 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. Neurofibromatosis causes tumors to grow anywhere on or in the body.

Neurofibromatosis, type 1 (NF-1) is most common, occurring in 1:3,000 births, and is characterized by multiple cafe-au-lait spots and plexiform neurofibromas (pNF) on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

This is the form of NF that Sara is living with. To read about the other forms NF can take, please click the link below.

Information provided by www.ctf.org.