This morning the Today show had a segment on a little girl with Neurofibromatosis (also called NF). The reason I am blogging about this is as many of you know I have this disease as well. Savannah inherited it from me. The other 2 children to do have any signs of it. The video gives a good explanation of it and this little girl is just precious!
Thursday, July 2, 2009
A segment from the Today Show
http://today.msnbc.msn.com/id/26184891/v
Posted by John and Dana at 3:12 PM
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2 comments:
That girl IS adorable! I love the ears!!!
Lucas was born with a café-au-lait on his forehead. It always seemed weird to me, but with vitiligo, I just chalked it up to his pigment issues. But I'm going to keep my eye out for more of those, and freckling in the groin. I never heard of the condition before. Except, I think, on House (but they don't tell you what it is - they just throw words around). Thanks for educating me about this seemingly common, yet unknown condition.
I wish both you and your dd strength in your battles against NF.
Thanks Michelle. We are pretty lucky so far as far as complications go. People are usually really surprised to find out we have NF.
It is very common..more common than a lot of other disorders that get a lot more attention. I think that is heavily due to the fact the manifestations of the disease can cause people to be so self conscious. The knots are not very pretty. Usually they begin to diagnose at 5 or more cafe au laits. I hope your son does not get any more, but if he does feel free to ask questions.
You are right about House. They use a lot of real medical words and are usually more true to medicine than some of the other medical dramas (Grey's Anatomy reattaching a limb that had been laying on the side of the road for hours is my favorite impossible storyline). However, they do tend to not really explain..or at least not explain in terms people who are not in medicine can understand..but I think that is part of his character.
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