ANA Discussion Forum

General Category => AN Issues => Topic started by: BGGore on March 10, 2016, 03:17:22 pm

Title: neurafriboma
Post by: BGGore on March 10, 2016, 03:17:22 pm

One year ago I had cyberknife treatment for AN.  Recently I had a neurafibroma removed from my hand.  Knowing that I have AN, the surgeon said that it is related to the AN and that there could be others, that it is genetic .  He had previously asked if I had been genetically tested, which I have not.  My question is would it be beneficial to me/my family to have it done? I do not understand the implication.
Thanks for any help.

Title: Re: neurafriboma
Post by: ajgordish on April 20, 2016, 04:35:18 am

You may possibly have a genetic disorder called Neurofibromatosis Type 1.  Our adopted daughter has this. It causes these tumors to grow on nerves throughout your body.  There is a certain criteria for having NF1, however.  Do you have any marks, like birth marks on your skin?  They are called cafe au'lait spots.  My daughter has 30  -40 of these spots in various sizes.