Monday, May 2, 2016

May is National Neurofibromatosis Month

May is National Neurofibromatosis (NF) Month.  What is NF?

According to the Children's Tumor Foundation, Neurofibromatiosis (NF) is the term for a set of three (3) genetic disorders. These three disorders are NF1, NF2 and Schwannomatosis. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is usually diagnosed in children; about 1 in every 3000 births are affected by NF1. All three of these disorders can cause tumors on the nerves anywhere on or in the body.

The most common of these is, NF1 and is characterized by pigmented spots on the skin, often referred to as cafe-Au-lait spots. NF1 is also known as peripheral NF or von Recklinghausen's disease. Von Recklinghausen was a German physician who first discovered the neurological component of the disorder in 1882. Several other health complications have been linked to NF1, including learning disabilities (which affects up to 60% of people with NF1), bone and other skeletal abnormalities and some cardiovascular defects.

Another type of Neurofibriomatisis is NF2, which has far fewer incidences than NF1, affecting one in about every 25,000 births. NF2 is a disorder which causes tumors to develop on nerves in specific areas of the body. The area which characterizes NF2 are the eighth cranial nerves of the brain; tumors develop on these nerves which control hearing, which can cause loss of hearing.
Dr. Acosta speaks April 9, 2016 at a
Neurofibromatosis Conference in Overland Park.
Photographer Kevin Surbaugh

People with NF2 sometimes can develop tumors in other parts of the body as well, including the spinal cord and other areas of the brain.

The final type of NF is Schwannomatosis. Which is the rarest form of NF affecting about 1 in every 40,000 births. While there is a strong genetic link with NF1 and NF2, only 10% of Schwannomatosis are thought to be inherited. Schwannomatosis shares similarities with NF2, however it normally does not normally cause hearing loss. Instead a key symptom is chronic pain brought on by tumors which grow on nerves throughout the body.

National Neurofibromatosis Month aims to raise awareness for this rarer type of disease. While NF is more common than cystic fibrosis,  muscular dystrophy, and Huntington's Disease combined, it the least known of any of those conditions.

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