Comments on: Neurofibromatosis: MRI can help!

By: Laura

Laura — Mon, 02 Nov 2009 04:15:11 +0000

me and my son has NF …look at nf.org..they have a lot of inof be good for and camp

By: Amy Yowell

Amy Yowell — Sat, 27 Jun 2009 05:10:49 +0000

My son has NF 1 and he doesn’t have any of the tumors like shown here in this picture. He does have several LARGE ones inside his body that are wrapped around his esophagus, his spinal column and his airway. Pretty much the only two things in that general area that aren’t wrapped in neurofibromas are his heart and lungs. As they grow, they are afraid that they will close his airway but we are hoping to find something to help get rid of them or at least slow them down. I have written a book about him and our lives and I have learned so much about NF patients and their families through talking to others. I think my next book will be a book about different NF patients and what they go through with this disease and how they are affected. You can come to my blog if you like http://www.MyMommyNeedsALife.com. My son will be 13 in a few months and we are very lucky to still have him.

By: Kristi

Kristi — Wed, 11 Feb 2009 22:08:54 +0000

Your pic of “Typical example” is actually a RARE example of the disease. I have NF 1, as do a few people I know…..

By: tomography

tomography — Wed, 02 Apr 2008 18:15:38 +0000

Bill,
thank you very much for this useful link! It is by all means thorough and complete! Great suggestion.
Sincerely,
Andras

By: Bill

Bill — Tue, 01 Apr 2008 20:55:39 +0000

For those looking, more useful medical information about neurofibromatosis can be found here.