I have neurofibromatosis, also know as NF and I think people definitely be more aware of this disease. NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births). NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation.
Mine was spontaneous! I was diagnosed when I was only a few weeks old, although I have a very mild case. It resulted in having an amputation when I was two and a half years old. I have café-au-lait (spots are dark spots on the skin that look like birthmarks) and a few neurofibromas (bumps on the skin) for more information you can go to www.nfinc.org
NF has two genetically distinct forms: NF-1 and NF-2. The effects of NF are unpredictable and have varying manifestations and degrees of severity. there is no known cure for either form of NF, although there is always hope.
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Information from http://www.ctf.org/aboutnf/nf1/diagnosisnf1.htm
Neurofibromas, the most common tumors in NF, are benign growths which typically develop on or just underneath the surface of the skin but may also occur in deeper areas of the body. Neurofibromas, which are composed of tissue from the nervous system (neuro) and fibrous tissue (fibroma), usually develop around puberty although they may appear at any age.
The tumors are not contagious. Nodule-like surface tumors are known as dermal neurofibromas. Plexiform neurofibromas grow diffusely under the skin surface or in deeper areas of the body.
The presence of multiple neurofibromas is an important diagnostic sign of NF. Single neurofibromas may occasionally occur in people who do not have NF. The number of neurofibromas varies widely among affected individuals from only a few to thousands. There is no way at present to predict how many neurofibromas a person will develop. Dermal neurofibromas rarely, if ever, become cancerous. Such a change, called a malignant transformation, may occur, although very rarely, in plexiform tumors. Therefore, it is important that patients be in the care of an NF specialist. Some neurofibromas, depending on their location and size, can be removed surgically if they become painful or infected, or cosmetically troublesome. A new tumor sometimes appears where one has been removed, particularly if that tumor was not removed completely. There is no evidence that removal of growths will increase the rate of appearance of new growths, or can cause incompletely removed tumors to change from benign to cancerous.
I once had a boyfriend who said they were the “most disguting things” he ever saw. They weren’t “natural.” He also wondered why I had low self-esteem.
Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.
(from www.ctf.org)
I have a masive one on my arse. Oh the humanity…
