Around Campus Editor
For some, the month of May means graduation, summer break and Mother’s Day. To others, the month means Neurofibromatosis Awareness.
According to the Children’s Tumor Foundation Web site, Neurofibromatosis is a genetic disease and is not contagious. The disease causes tumors to grow along nerves; it can affect various types of non-nervous tissues such as bones and skin.
Neurofibromatosis falls into either three different classifications NF 1, NF 2 or Schwannomatosis. Of those classifications, NF1 occurs in one out of every 3,500 births throughout the world, making it the most common form of NF.
What makes this disease so interesting is, according to the Web site www.ctf.org,
Neurofibromatosis is more prevalent than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and tay sachs combined. Neurofibromatosis is found throughout the world. It affects both males and females equally with no particular racial, geographic or ethnic distribution.
Most cases of NF1 are mild to moderate. Symptoms of NF 1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain and spinal tumors; loss of limbs; malignancies and learning disabilities.
Most people who know me would never guess that I suffer from NF 1. In 1989 at two years old, I was diagnosed with it.
Some of my symptoms of the NF 1 include various tumors on my skin, a tumor on my right optic nerve, right curved tibia, learning disabilities and café-au-lait spots, otherwise known as birth marks that are a light tan color.
Living with NF has affected my daily life. I remember growing up not being allowed to do certain physical activities because of the chance of breaking my leg. If I broke my leg then it would have to be removed.
I have been through so many MRI’s that I have lost count. The need for the MRI’s was to see if there were any tumors in my brain that would cause trouble. There were times when I would go to Scottish Rite Hospital in Atlanta, Ga. (now under a different name) where I would see, at times, seven doctors in one day, including a neurologist, genetics specialist, a child psychologist and even an eye doctor.
When it comes time for me to have children, I have a 50 percent chance of passing NF to them. Also, when I am pregnant, a chance stands that the disease could worsen.
I look at my case of NF and then look at someone else with NF 1 or NF 2, and I am grateful that mine is not as severe as other’s. At the same time, however, it saddens me because there is no cure. I know that as I get older, I still stand the chance that mine could worsen.
Why did choose to write a commentary on something of this matter? For the Voice’s last issue of spring 2007, I want to make people aware of NF, that the month of May is Neurofibromatosis Awareness month, that it is a disease that currently does not have a cure. I want people to know and start to understand the disease and help find a cure.
Spread the word; help find a cure.
Have a comment? Please e-mail us.
©The Voice 2007
Revised 10/29/2007 06:26:00 PM — http://www.uamont.edu/organizations/thevoice/4_24/nf-comm.htm