May is Neurofibromatosis Awareness Month


That’s a big word! Let’s break it down:


Neurofibromatosis can be abbreviated to NF. There are three types of NF: NF1, NF2 and Schwannomatosis.

Taken from here:

There are three main types associated with Neurofibromatosis: NF1, NF2, and Schwannomatosis. Each type occurs with differing frequency in the general population. Based on the numbers reported at, NF1 affects approximately between 1 in 3,000 to 4,000 births; NF2 about 1 in 40,000, while Schwannomatosis also affects 1 in 40,000.

NF1 (also known as Von Recklinghausen’s disease) is characterized by the unchecked growth of benign tumors on or under the skin, freckling and “cafe-au-lait” spots, and can affect the entire body. Because these tumors can cause disfigurement, NF1 is often mistakenly thought to be purely a cosmetic problem. NF1 growths can also affect bones, depending on the severity of the individual case. Other problems sometimes associated with NF1 include larger head circumference and learning disabilities. As there is no cure, an NF1 patient might undergo surgical removal of the larger, more painful (and in rarer instances malignant) tumors. There is currently no other widely-used or recommended treatment to arrest or reverse the growth of these tumors or “neurofibromas.”

NF2 is also known by its longer name: bilateral acoustic neurofibromatosis. Unlike NF1 which can often be diagnosed at birth due to the presence of six or more birthmarks, NF2 symptoms might not present until later in life. The common symptoms are hearing loss due to the growth of benign tumors along the eighth cranial nerve, which connects the brain and inner ear. Tumors associated with NF2 also affect the brain, cranial and spinal nerves. This can result in seizures, loss of balance and changes in vision. Much like NF1, the NF2 patient would require surgical intervention to address these issues.

Schwannomatosis has only recently been recognized as a separate type. According to further details reported by, individuals diagnosed with schwannomatosis have multiple schwannomas, or tumors that develop from the protective coating surrounding the nerve sheath of the body’s cells. They do not present outside the body or on the skin surface like in NF1. There is often much more pain associated with Schwannomatosis, moreso than NF1 or NF2. Schwannomas tend to affect the cranial, spinal and peripheral nerves, but not the acoustic. As such, patients with schwannomatosis do not lose their hearing.

Neurofibromatosis Type 1 is the most common neurological disorder caused by a single gene.  Doctors have now identified the gene that causes NF1.
I have Neurofibromatosis Type 1.

About yewnique

I am a Malaysian-born woman who is married to an Australian and now live in Melbourne, Australia. I am a mother to four children. I home school. I like reading, writing, and cooking -- not necessarily in that order. I care about grammar and spelling, but am nonchalant about the Oxford Comma. I try to follow Christ's teachings.

Posted on Monday, May 2nd, 2011, in Neurofibromatosis. Bookmark the permalink. Leave a comment.

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