1. Had NF1 since 12 years old
    Ken Sauer Ken Sauer United States says:
    January 31, 2010 at 2:00 AM

    I have had NF1 since I was about 12 years old. I am now 64. I have had literally hundreds of tumors removed with surgery. Some were as big as a small egg. While others were 1/4 to 1/2 inch in diameter. They can grow in the body anywhere. Or on the skin. Insidious little b------s! The information you have provided on Gleevec is at least hopeful for me, and many others with NF1 or NF2. I hope it is found to be a cure for this disease---maybe not in my lifetime. But for people worldwide, after I'm gone. Bless you for the work you are doing on this disease!

    Reply
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