I am finally going to explain my “handicap” to all my blog friends. I have been wanting to do this for some time, but it is really quite complicated to explain since my disorder affects everyone in a different way.

I have Neurofibromatosis (NF). It is not a disease, but a disorder. I did not “catch it” from someone nor will I give it to someone else by being in contact with them. I will most likely die with NF, not because of it. Neurofibromatosis is caused when some part of your body, in this case a single gene, does not work quite right and it affects or changes the way other parts of your body function. So, it is basically a developmental disorder.

Something in the gene’s chemistry causes tumors which are growths of excess tissue from the nervous system (neuro) and other fibrous tissue (fibroma). Some people, like me, develop neurofibromas just under the skin, and some develop clusters of tumors on or around nerves deep in the body.

NF is a progressive and a lifetime thing. Over the course of my life, it has caused changes in my body and the way it functions. I was lucky (well, blessed) because my changes were slow. For some people the disorder progresses more quickly.

The most common sign of NF is the presence of cafe’-au-lait spots on the skin. They are similar to freckles but are darker and bigger. I have a bunch of these all over me, mostly on my stomach, so it is not that noticeable.

The other sign is the neurofribromas that I mentioned earlier. These tumors grow in and along the nerves and wherever there are nerves. They are not usually painful, but they can be ugly. That is one of the things that make me insecure. My many “fibros” cannot be seen because of the clothes I wear, but I do have a couple on my face (if you look closely at my picture, you’ll see one on my chin). I really am blessed because I have seen and known people covered with them. Some people look quite deformed, so, of course, they get many stares.

Some people with NF also have orthopedic problems with their bones and joints, which is my biggest problem. Scoliosis is the most common orthopedic condition. I have problems with my left hip and leg, which makes it painful for me to walk. Some days are worse than others. NF may cause weakness of the bones making them easier to break and heal properly.

There are many other factors of NF, such as learning disabilities, deafness, and blindness. I think the biggest problem a person with NF can have, at least for my case, is psychological. People react to things they fear or do not understand by withdrawing or by making fun. This was what happened to me as a young child and affects me to this day. I deal with it by joking about it. I always say, “I’m going to be ugly someday, and I am not even pretty on the inside! ” LOL! Vain, huh?

I do not know what is going to happen to me in the future concerning my neurofribromatosis. My little skin tumors just seem to keep coming. It is just something I live with and have to wait to see what happens. Since it is a heredity disease (I am the first to have it in my family), I chose not to have children since it’s a fifty percent chance of me passing on the genes, but you already read about that “miracle.”

Most days, I am thankful. It could be worse. I am not suffering from cancer, I can walk, see, hear, and I do not have any learning disabilities. Is it painful? Yes, sometimes. I live in pain most days (I get terrible “fibroid” headaches), but I am not going to die from it. I may have people staring at me because of it, but, hey, I love attention! LOL!

I am blessed! I am loved by my husband and a son who thinks I am “so pretty” and tells me it every day. My A’s beat the Yankees last night (4-3) after being crushed by them (15-2) on Opening Day. God is good! (It’s the little things, you know?)

*Some of the information was taken from a booklet on Neurofibromatosis by Elizabeth Collins and Barbara Wellman.