Re: Neurofibromatosis 1
When I was diagnosed, it was based upon cafe au lait spots, probabaly about ten, but I'm not entirely sure, as they are all gone now. There was also a neurofibroma on my optic nerve of my left eye. After I was examined and an MRI of my head was done, neurofibromas were found.
In my every day life, I can't say that the NF affects me too much. The neufibroma on my eye has given me what most people understand as a "lazy eye", which means that occasionally, especially when I am tired, it wanders to the side, but eye exercises have helped to help me to make that happen less often.
The neurofibromas are tender, but the pain is not very bad. If one in particular is painful more often, removal is usually very easy, depending on the nerve involvement.
It has not had an effect on my ability to perform in school or in sports.
If you have any more questions, or if your son does, let me know. I am still very much in touch with a child's perspective.
No one else in my family has had NF, so if your son is the first, know that you are not the only confused one.
Last edited by wid; 03-20-2008 at 07:22 PM.