I was wondering if anyone has a family member with neurofibromatosis. My 10 year old son was recently diagnosed. I've been reading up on it but would appreciate any feedback. Thank-you!
Hi! My neighbor has two sons with it and she would be happy to talk to you or email you and answer all the questions you might have. I sent her an evite to join momsource however I will give you her email address: ____@____.com I hope this helps
S. Shaw
Hi K.,
NF1 is very rare but more common today than it used to be. Anytime I see something that affects the nerves/neurological system I dig a little deeper. This link seems to be one man's success story with NF1.
http://www.earthclinic.com/CURES/neurofibromatosis.html
K., I do know that there are a lot of toxins in our homes, water, air, and our food supply and ultimately our bodies that have changed how our bodies function, i.e. mutations. (I do seminars and speak on environmental toxins and their relation to our health, specifically cancers and neurological problems like child behavioral disorders.) You may want to research a little deeper and see where this link takes you.
I'm terribly sorry you're dealing with this and I'm sorry I don't know more. If you need to talk feel free to email me back. I'll be praying!
God bless!
M.
Hi K.,
Neurofibromatosis affects 1 in every 3,000 births. There is tons of information at www.ctf.org (children's tumor foundation). I have two boys and a husband with this disease and would happy to talk with you and try to answer any questions you may have. My neighbor gave you my email but you need to send it to ____@____.com need the underscore between my two names so it can get to me.
I look forward to speaking with you and answering any questions you may have.
my son has the same condition. in 2006 he had a tumor removed from his left eye. he going to be seeing a genetics specialist soon
