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NF2 is...

Q. What Is NF2?
A. NF2 is... Neurofibromatosis Type 2,
MISME Syndrome - Multiple Inherited Schwannomas, Meningiomas and Ependymomas,
MERLIN - Moesin-Ezrin-Radixin-Like Protein,
BAN - Bilateral Acoustic Neurofibromatosis or Bilateral Acoustic Neuroma

There is no cure for the rare genetic disease known as Neurofibromatosis Type 2 (NF2). There is no treatment to stop tumor growth or to destroy all of what might be potentially hundreds of tumors an individual with NF2 may have. Tumors are generally Benign (Noncancerous), but can become Malignant (Cancerous).

Each individual is different in the number of tumors and exact locations, but tumors are primarily found around and within the brain and spinal cord. Tumors can also be found on nerves in the body as well as masses seen on the skin surface. Approximately 98% of people with NF2 develop tumors on the hearing and balance nerves, which are the first tumors to typically require treatment. Eye issues are also a common occurrence; some are unrelated to tumor nerve damage, like Juvenile Cataracts.

Surgery to remove a tumor, for individual tumor management is the only way to guarantee a tumor will do no more damage. Radiation Therapies might help manage a tumor for a time but is not without its own risks. Chemotherapy like treatments, so far are still in trials and are all limited in their ability to help.

NF2 tumors can start to grow at some rate potentially at birth. For each individual with NF2, which issues are dealt with and when they might occur are dependent on; 1) the exact genetic NF2 form an individual has, 2) reactions to previous treatments and 3) environment variables. - Learn More



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