Public Awareness: Neurofibromatosis

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Senior Member
Jan 16, 2002
What is Neurofibromatosis? Neurofibromatosis is an inheritable genetic disorder which primarily affects the growth of non-cancerous tumors on nerve tissue throughout the body. This disorder can affect all races, both sexes, and all ethnic groups.

There are two ways in which one can acquire this disorder. If one of the two parents has NF, there is a chance that the child could inherit the disorder. The second way that one can acquire NF is from a spontaneous gene mutation. This mutation happens 30-50% of the time.

Scientists have classified NF into two distinct groups: NF-1 and NF-2.

NF-1 is the most common form of the disorder, infecting 1 out of 4,000 people in the United States. When a physician attempts to diagnose a person with NF-1, he or she looks for two of the following symptoms: café-au-lait macules (or small light brown spots on the surface of the skin), severe scoliosis (curvature of the spine), tumors (specifically the ones that grow on nerves under the skin [neurofibromas] and those on the optic nerve), freckling in the armpit or groin areas, or benign growths in the iris of the eye.

The symptoms of NF-1 that involve the skin are usually evident at birth or infancy.

Neurofibromas or the tumor-related symptoms become evident around 10-15 years old. Usually people with NF-1 show mild symptoms and can go on to leave normal and fulfilling lives. Yet, NF-1 can be extremely debilitating.

NF-2 is the rarer of the two, affecting 1 out of 40,000 people in the US. When a physician goes to diagnose a person with NF-2, he or she looks for bilateral (both sides of the body) eighth cranial nerve tumors or checks the patient’s parents, siblings, or children for the same symptoms. The bilateral eighth cranial nerve controls auditory functions.

The symptoms of NF-2 can occur as early as the teen years. Hearing loss, facial pain, and ringing in the ears can also be included as symptoms.

As for treating this disorder, surgery can be implemented when dealing with NF-1. Tumor removals are common in NF-1. Back braces can be used with scoliosis. As for NF-2, surgery can be used to fully remove tumors, but can result in hearing loss. Radiation and chemotherapy are also an option for both NF-1 and NF-2. Other than those few options, one can only monitor the symptoms and watchfully wait.

There is no known cure for NF.


Someone in facebook was recently contacted by Gigantic productions, a company who has been responsible for the TV series on MTV called True Life. One of there current productions in the True Life series is "True Life: I Live With Neurofibromatosis". Here is a message from them:

Are you living with Neurofibromatosis? Do you have visible tumors or spots on your skin that you wish you could get rid of for good? Were you recently diagnosed with NF, or have you had it as long as you can remember? Are you planning on having surgery to remove a tumor or undergoing treatment to stop its growth? Is NF causing problems for you at school, at work, or in social situations? If so, MTV wants to hear your story.

If you appear to be between the ages of 16 and 25, please email with the details. Please include your name, location, phone number and photograph if possible.

I think this is a great oppurtunity for anyone out there with NF who'd like to get there story out and generate some awareness. Just send them an email about yourself and your story, because I know you all have a story to tell.


For those who are suffering or has friend/relative with this disease, you can join the group in facebook :

Thanks for reading.

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