Hi ,I have a friend /workmate who has neurofibromatosis, and have just mentioned this discovery of health boards to her, she has asked me to see if there is anyone out there who is like her, apparently its very rare , so if anyone can help I will give her the site to go etc, as feel she would benefit immensly just by talking to others.
The Following User Says Thank You to ajas For This Useful Post: captcire (04-16-2012)
My girlfriend's son who is 6 years old has it and she also had a coworker who has it. NF is not as rare as it used to be and there are alot more support groups out there than you would think! [REMOVED]
Last edited by Moderator BAC; 12-15-2004 at 01:15 PM.
Reason: Do not instruct others on off board searches. Thank you!
Thanks for the replies I will definetly get her on to this board, she is looking at lasertreatment to blast the latest 2 lumps rather than go thru surgery again and again etc.
hope you are keeping well.