tag:blogger.com,1999:blog-6432747512136647685.post6692281278825925069..comments2024-03-21T20:44:46.883-06:00Comments on Thriving with Neurofibromatosis: Connecting NF StyleNF Mommyhttp://www.blogger.com/profile/13559650798413176925noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-6432747512136647685.post-91318988255072592552015-12-28T07:50:27.666-07:002015-12-28T07:50:27.666-07:00Hi
Just found your blog and must say I really lik...Hi<br /><br />Just found your blog and must say I really like and apprieciate your work. Generally I avoid Googling for this issue as it only makes me sad and quite funny it is when I feel bad and sad that I tend to Google for it. Not very rational. :p<br /><br />I was born with NF1 without any of my parents having the condition or any known historyn of it in the family, Was lucky enough to have febrile seizures in my childhood and at this one time I ended up at the hospital where they at the same time. Very early, around age 7 or 8 I started chemo. <br /><br />Due to the treatment I missed a lot in school and was weaker than the other kids and a hard time keeping up in their tempoö. I was given a lot of extra help and even had to go to extra PE. Already there I guess I always knew something was wrong with me, but I am not sure. My parents did not talk a lot about this with me. <br /><br />At age 13 my port au cait through which I had recieved my chemo was removed and I thought this meant I was "normal" now. My parents continued being very silent about my condition and it was not until after a check-up when I was 15 that I heard the name of disease and when I came home I did some research and found out my condition was a little worse than I thought. Ever since that moment I have had very poor self-esteem especially in the field of "fining a girlfriend". <br /><br />To some extent I can understand my- and other in the same situation- parents for not talking to me about this when I was little, but I really wish they would have had the talk when I was a little older at least. They just kept quiet as if everything was normal making me think I was 100% healthy. <br /><br /><br />Anyways, since I was lucky enough to get diagnosed and treat in such early age I have been able to live a normal life. Today I am studying at University and no one has ever suspected I have a medical condition. The only way I am suffering in is that I have distorted vision that cannot be fully fixed even with glasses. Thus I cannot have a drivers license, but today there are a lot of "normal" people with glasses too and "normal! people without a license so. <br /><br />This far I have not met anyone with NF...Not that I know of at least. Anonymousnoreply@blogger.com