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When a patient is diagnosed with NF2, this is a condition that can be quite frustrating for the patient, the family and physicians to deal with. This is a genetic disorder that leads to a predisposition for patients to have tumors in their central and peripheral nervous systems. Unlike its cousin disease, NF1, there will far fewer skin manifestation of this disease. 

Patients with NF2 will likely have schwannomas. These are tumors that form on the vestibulocochlear nerve leading to patients having problems with their hearing. They will likely be suffering from tinnitus, a ringing of their ears, and hearing loss on the affected side. If it is bilateral, which is also quite possible with NF2, the patient will become deaf in a few months typically if they still have hearing capabilities. 

Because this disease affects the central nervous system, patients will also likely have tumors that can begin to grow in their brain. This may lead to balance problems and visual disturbances. 

Patients will need to have genetic testing and undergo an array of diagnostic testing in order to diagnose to what extent they have the disease. MRI studies will have to be done to try to pinpoint where the tumors are currently growing and if surgeries can be performed in order to remove them. Patients will also have to do annual examinations of their ears and eyes in order to make sure that they are still functioning properly. Children with NF2 also are likely to have cataracts form, even at such a young age, so parents must be aware of these possibilities to help improve the quality of life of the patient. 

It will be hard to quantify the prognosis of patients diagnosed with NF2 because it is quite variable. In patients who have tumors located in more sensitive areas like in the brain, it is possible that they may have more severe symptoms and succumb to the disease sooner than with someone having more peripheral manifestations. The prognosis ultimately depends on a number of factors like age of onset of symptoms, the severity of symptoms, the severity of hearing defects and where the other tumors are located. 

It is possible to live anywhere from 2 to 70 years old with this diagnosis so as you can see, it is still possible to have a long life with such a condition. On average, studies show that the average rate of survival after a diagnosis of NF2 is 15 years, however, from the time of diagnosis. This is likely to change in the coming years as the diagnostic tests for NF2 are becoming more and more precise. It seems that families with NF2 typically have similar symptoms so if there is a relative in your family with obvious signs of disease, those would be good indications to determine what future signs of the disease you could expect yourself. 

The disease is not curable because of its roots in the genetic code but surgery and chemotherapy or radiation can help reduce the size of the tumors. Most of the time, these tumors are benign and will not spread and the reason the symptoms may worsen is that the size of the tumor is increasing. [1]

 

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