I was born with a birth deffect called neurofibramatosis. Woah what in the world is that you say? Its quite complicated to explain, I am still learning. here is NF (as it is abbreviated) 101
two kinds
NF 1: if patient has NF, passing it on to the next generation is 50%. Chance of it occuring spontaneous is 1 and 4,000
NF 2: more severe of the two, same as passing it on to next generation...chance of spontaneous is 1 and 40,000.
I have NF 1. Doctors found this out because of several symptoms common to this birth deffect
a) a large head circumference (as a baby it was like in the 98%)
b) what are called cafe au spots...kind of look like birth marks. I have quite a few all over my body.
those two things is what threw caution into the wind.
later on, age 3, I had trouble with speech (another symptom) at that age I only knew 3 sounds in the english language. It took me like 10 years to get out of speech thereapy.
another factor can include, learning disabilites.
and then there are what called neurofibras. I really dont know how to explain what these are. But upon recent research I found out that some patients have thousands of these. But, they are like little knot-like things that can be an outward appearance, or inward.
A few months ago I found several of these...i was a little scared, because I mean I went nearly a quarter of a century without these things, and now they are appearing. I mean will I have a late onset of some of the more severe symptoms of this birth deffect?
the severe are tumors, tumors that can grow on organs of the body, on the brain, on the optic nerve and all that good stuff. I mean, if it happens, I just want to have to strength to have a good attitude. and if these neurofibras start to show up like as an outward appearance...then let me be able to handle that. I mean, my self-esteem is low as it is, I have been teased and laughed at before (when I was going through speech therapy). And I just dont want to go through that again.
One of the user groups that comes out to the camp I used to work at (camp for all) is a family camp in which one of the members has NF. And I have seen several ppl that have these neurofibras on the outside. And i just dont know how they can do it. I mean it has to be painful, my heart totally goes out to them.
So, after all this, what is the prayer request.
well just strength, I mean I dont care if this manifests any further--if that is Gods will. But if that is the case then I want to be strong, and not lose focus.
two kinds
NF 1: if patient has NF, passing it on to the next generation is 50%. Chance of it occuring spontaneous is 1 and 4,000
NF 2: more severe of the two, same as passing it on to next generation...chance of spontaneous is 1 and 40,000.
I have NF 1. Doctors found this out because of several symptoms common to this birth deffect
a) a large head circumference (as a baby it was like in the 98%)
b) what are called cafe au spots...kind of look like birth marks. I have quite a few all over my body.
those two things is what threw caution into the wind.
later on, age 3, I had trouble with speech (another symptom) at that age I only knew 3 sounds in the english language. It took me like 10 years to get out of speech thereapy.
another factor can include, learning disabilites.
and then there are what called neurofibras. I really dont know how to explain what these are. But upon recent research I found out that some patients have thousands of these. But, they are like little knot-like things that can be an outward appearance, or inward.
A few months ago I found several of these...i was a little scared, because I mean I went nearly a quarter of a century without these things, and now they are appearing. I mean will I have a late onset of some of the more severe symptoms of this birth deffect?
the severe are tumors, tumors that can grow on organs of the body, on the brain, on the optic nerve and all that good stuff. I mean, if it happens, I just want to have to strength to have a good attitude. and if these neurofibras start to show up like as an outward appearance...then let me be able to handle that. I mean, my self-esteem is low as it is, I have been teased and laughed at before (when I was going through speech therapy). And I just dont want to go through that again.
One of the user groups that comes out to the camp I used to work at (camp for all) is a family camp in which one of the members has NF. And I have seen several ppl that have these neurofibras on the outside. And i just dont know how they can do it. I mean it has to be painful, my heart totally goes out to them.
So, after all this, what is the prayer request.
well just strength, I mean I dont care if this manifests any further--if that is Gods will. But if that is the case then I want to be strong, and not lose focus.