i find it hard to live with neurofibromatosis (neurofibromatosis is a genetic disorder that causes non cancerous tumors to grow under the skin and on the nerves you can read more about neurofibromatosis at
www.ctf.org ) because docotors never listen they dont understand neurofibromatosis at all and they dont even try its so hard to find a good doctor or even one that knows what neurofibromatosis is, there is ONE doctor ONE surgeon who actually listens to me, but he cant do surgery on the tumors in my chest that are causing me major pain my chest pain has landed me in the hospital many times, one time in may of 2008 it was so bad my mom had to call 911 i was in the hospital for 6 days, we cant find anyone who is willing to do surgery for me, i hope and pray that we do find someone who can take away some or all of my chest pain