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Has anyone ever heard of neurofibromatosis before? |
I have the disorder and am looking for more people to talk to that have it. It's sort of rare. It is amazing how prevalent a disease can be, and yet so unknown. Neurofibromatosis (NF) is the most common neurological disease caused by a single gene. Both forms, NF1 and NF2, affect more than 100,000 Americans. The Children鈥檚 Tumor Foundation Web site (www.ctf.org) says 鈥渢his makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined.鈥?While there is no known cure for NF, and it鈥檚 various forms, research is working toward an effective treatment. This is a tumor arising from the connective tissue of the nerve sheath . It is a developmental disorder often runs in families. It is not a typical tumor. Types: It may be 1.local or solitary or2. Generalized neurofibromatosis.3 Plexiform 4.Elephantiasis 5. Cutaneous. I have NF1. although it is unsightly because if the small tumors & cafe au lait spots, I really dont worry about it because I also have multiple sclerosis. Yes, I'm a neurological mess. Yes, it is rare. I do not have it but it is a nerve/muscle affliction/disorder that causes, for some people, small knots to form which looks like lumps under the skin! Other people have the larger knots form which causes some disfigurement. Local universities with hospitals will probably have some groups that you could join to talk with others that have it! You can ask how to live with it and what to expect. Several movies were made about the disorder. One was with Roddy McDowell I believe and the other with Cher! This disorder is one that caused me to think about going into medicine and becoming a neuro surgeon, however, I became an educator instead! Good Luck, and God Bless....I will pray for you! I have always thought stress along with a recent virus causes most of our immune systems to malfunction! Therefore, we are open to these medical rarities! a friend of mine has it and her mother and her son, too. |
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| Non-Hodgkin Lymphoma Nicotine Niacin Neuropathy Neuromuscular Disorders Neurologic Diseases Neurofibromatosis Neuroblastoma Nerve Diseases Nephritis Neoplasms Neck Disorders Neck Injuries |
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yes, but unless you've had signs of neurofibromatosis from birth its unlikely you have it now. Far more likely is a benign solar keratosis - a raised rough warty greyish or brown lesion that a... That sucks. I'm 23, but I have type 1, I was diagnosed with it when I was 15. I suppose you take one day at a time and hope, that a cure is found for it. ...yes , my son had it and i hope you are being followed by a neurologist on a constant basis. its very important ..... ...My boyfriend has it, and he's gone through a lot. Many surgeries over the years (and he's only 29) and a rough childhood with teasing and hospital stays. I think NF ultimately produces ... I have NF and My entire back and neck are brown. My first surgery was 15 years ago to remove a 5lb tumor. I have had to go back three more times to remove excess skin or bulk. I hate it because... It has autosomal dominant inheritance pattern. So, assuming your spouse does not have neurofibromatosis and is recessive (aa), and you are either homozygous or heterozygous (AA or Aa). Your child... The easiest way to find that out is call one of the hospitals and ask. If there is one in one of the London hospitals they will be able to tell you which one. ...I'm surprised you're that old and haven't been diagnosed before this. Have you not had any symptoms up til now? Anyway, if you're lucky, you won't get too many flare-ups an... |
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