What is Neurofibromatosis

Neurofibromatosis (NF) is a genetic disorder that causes tumors to grow along the nerve pathways.  50% of the time NF is a spontaneous mutation, meaning that the gene did not come from mom or dad.  It occurs in 1 in every 3000 births.  Along with tumors, NF can cause a multitude of other problems including, scoliosis, hypertension, disfigurement, learning disabilities, speech delays, optic gliomas, and congenital defects of the bone.  There are many more challenges that NF can present as no case is every the same from person to person.  Even from family member to family member, the severity is different.

In Kendall's case, she is included in the very small percentage of people with NF who are considered life threatening.  She suffers from hypertension, low muscle tone, plexiform neurofibromas throughout her body (at least one being cancerous), scoliosis, chronic pain, itching, and bone defects.

There is currently no treatment for Neurofibromatosis.  Nothing can stop the tumors from growing, other than surgically removing them.  Unfortunately, many times the tumors are in areas that make surgery impossible.  Many studies are being done to change this and we are hopeful one will be successful before it is too late.

Please feel free to email me with any questions about NF.  For more information, please visit the Children's Tumor Foundation to learn more about what NF can cause.