This ring promotes Neurofibromatosis education, enlightenment, and encouragement. It is open to NF organizations, medical sites, and personal homepages. Sites pertaining to all aspects of NF-1 and NF-2 are welcome, including associated conditions such learning disabilities, scoliosis, epilepsy, acoustic neuroma, cancer, deafness, blindness, etc. NF information is too scarce, and public awareness is practically non-existent. Let's get together and make ourselves known!
I'm a victim of NF and I'm also a victim of uncaring health professionals. How do I inform my health care provider that NF can be dangerous if ignored it can get out of control and cause health problems later on in the victims life. I have several nerve sheath tumors and they are extremely painful. My health care provider thinks that injecting me with seripin will take the pain of the tumors away. He refuses to refer me to a neurosurgeon. What can I do to get this jerk to understand that NF should not be ignored? I have already received a letter from a hospital telling me that my health issue is resolved and they won't help me.
