neurofibromatosis - Neurofibromatosis Message Board

bigdogs35 · 07-25-2005, 12:45 PM

Has anyone every been diagnosed with neurofibromatosis(referred to as NF1 or NF2)? I would like to hear your stories related to this medical condition. I have had NF1 since I was 7 and I am now in my mid 30's. Survived cancer once from this disease and now going through cancer again.

Anyone been diagnosed with cancer as a result of NF1 or NF2? Please share your stories.

NEWDADDY · 08-04-2005, 08:54 PM

Hello I recently got married and had a child and found out that she had my birth marks not knowing that it was NF finaly got told what it was But poor girl got a very Stinky end she was dioganosed with aveolar rhabdomyoscarcoma a rare type of cancer. I my self not knowing what i had for 28 years finaly am knowing what all my problems were caused from,was wondering if people with NF are more likley to get cancer cause of the tumor supression gene?My daughter finished her treatment and waiting on final test results to come back.

spyrogirlkim · 06-17-2006, 08:42 AM

I have NF1,never had cancer from it but my Mom has NF1 and has one that turned to cancer in her leg.Going through chemo now.My nephew had lekema that is a link to his NF.There seems to be a strong link to cancer and NF in the family so I am nervous about my spinal tumors.But cant have them biopsyed cause of where they are at.