Posted by Lori K on August 19, 2003 at 10:06:19:
In Reply to: NF diagnosis... any help out there? posted by Shana on August 18, 2003 at 13:35:34:
My son was believed to have NF. It turned out to be Mastocytosis. They had biopsied a tumor from his armpit. At first I was relieved. The doctors didn't tell me much so I assumed he would be fine. I discovered that they didn't tell me much because they didn't know much about it. It can also be serious. I hope you find out what is happening with your child soon. I KNOW how scared you must be. I cried myself sick when I researched NF. A good support group is the BCNF. They will send you a thorough information packet for free regardless of where you live. Their website is below. Good luck and take care. You and your son are in my thoughts and prayers.