The first thing you should know about NF2 is the proper name: Neurofibromatosis Type II. There are actually two types of NF–NF1 and NF2. In short, NF2 produces benign tumors in the brain and along the spine (it affects the central nervous system), while NF1 produces benign tumors of the nerves outside of the brain and spine. Essentially, I have lots of brain tumors but they are not cancer. My doctors treat my tumors like cancer many times, with rounds of radiation, chemotherapy and surgeries. NF2 is a genetic disorder… it affects every cell in my body.
Each NF case is different!!! That is why NF is so difficult to understand, that and the fact that it is extremely rare. Usual statistics say NF2 occurs only every 1 in 40,000 people. I have only met two people in my life that have NF2. We have each had similiar treatments, but our bodies were all affected differently. You can get the drift of how mind-boggling this must be for doctors.
Why did I get NF2? Only God knows the answer to that question, but here is my journey so far. Let’s start at the beginning, shall we?
You might be wondering what sorts of challenges this disease brings to my daily life.
My physical condition and MRI scans say that I should not be walking, or doing many of the other things I do on a normal basis for that matter. Doctors are amazed at the strength that I have left in my body. But I know the truth: it is not my strength, but from answered prayer. I have seen God work in powerful ways during my journey–both in the good news and the bad news. I think Horatio G. Spafford said it best, “When peace like a river attendith my way; When sorrows like sea billows roll; Whatever my lot Thou has taught me to say, ‘It is well, it is well with my soul!'”
If you would like more information, here are some excellent websites about NF in general and NF2 specifics: