I couldn’t let another year go past without passing on some thoughts about Neurofibromatosis (NF).
The first piece of information you should beware of is that May is NF awareness month. So I am using two forms of media to pass on NF awareness, one through my Facebook messages and then through this post. In May of 2007 I wrote a commentary for my school news paper about NF. I will post the link to the article at end of this post.
When I was two years old I was diagnosis with NF. Throughout my childhood I was treated like any normal child, expect I wore a leg brace. Because my right leg is curved like a bow and arrow and if I were to break my leg it would have to be removed. Once a year I went for check-ups for my NF. There were years that I saw 7 doctors in one day! I typically saw a geneticist, neurologist, psychologist and some others that I know I am forgetting.
I was once told in my pre-teens years that I was stupid by a psychologist and that I wouldn’t go to college all because I did poorly on a test that she gave me. But I was also very sick that day with the flu when I took that test. But in December 2009 I proved her wrong, when I graduate from college.
I may have a learning difference but that didn’t stop me. I just had to learn to a different way to study.
When I was a teenager I was told that when I choose to have children there would be a 50% chance of me having a child with NF and my NF worsening during the pregnancy. A chance I am willing to take because I know that it is in the Lord’s hands. (When this happens I plan to write a blog about it.
I wore a brace until I was in the 5th grade. Now I know longer wear the brace and I think that my leg looks stronger and perhaps a little bit straighter.
I have two friends that have NF.
I have gone to an NF camp with my family before to be with other families with NF!
Neurofibromatosis affects many people and everyone is affected differently. There is no cure, but hopefully one day there will be.