neurofibromatosis (NF1)

Posted by meranda to Disease/Illness, Mar 18, 2010 10:53am

Not many people even doctors are aware of this disease. My self i wasnt aware of how bad it could be, I knew of it because my sons and I have it, but until my son was diagnosed with a tumor 3x3x4 wrapped around his brain stem and spinal cord, i never thought how dangorous this could be, now reading more about it it scares me. As well i couldnt believe how much my family worried and stil do and they wanted to know more, many people may have this and not even know. My son was 13, he had such drastict behavour changes, which i put off as a normal 13 year old, but everything got worse and it was far beyond the normal behaviour, there are so many signs now that i look back that if i was more aware things could have been a lot different. NF can also cause slow learning as we found out with my youngest son who is 10. there is just so much to learn about this disease that we have to get it out there and make people aware of it and get the schools to reconize the children who are affected so they can get help in class.