Any one know about neurofibromatosis?

Question

3 of my 4 children have been diagnosed with nf1 and apparently i have we were told 3 years ago when one of sons got taken into hospital. I dont really understand what is suppossed to happen or how it is suppossed to affect us I am 27 and have never had any problems. My sons seem fine they just have cafe o lait spots, as do i, which is what the doctor diagnosed it with. i just wanted to know what i am to expect from it.
Thanks

Answer 1

Tracey

Brian H has got it completely wrong. My Son and I both have N.F1 - email me if you want.

Answer 2

The neurofibromatoses are genetic disorders of the nervous system that primarily affect the development and growth of neural (nerve) cell tissues. These disorders cause tumors to grow on nerves and produce other abnormalities such as skin changes and bone deformities. Although many affected persons inherit the disorder, between 30 and 50 percent of new cases arise spontaneously through mutation (change) in an individual's genes. Once this change has taken place, the mutant gene can be passed on to succeeding generations. Scientists have classified the disorders as neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). NF1 is the more common type of the neurofibromatoses. In diagnosing NF1, a physician looks for changes in skin appearance, tumors, or bone abnormalities, and/or a parent, sibling, or child with NF1. Symptoms of NF1, particularly those on the skin, are often evident at birth or during infancy and almost always by the time a child is about 10 years old. NF2 is less common. NF2 is characterized by bilateral (occurring on both sides of the body) tumors on the eighth cranial nerve. The tumors cause pressure damage to neighboring nerves. To determine whether an individual has NF2, a physician looks for bilateral eighth nerve tumors and similar signs and symptoms in a parent, sibling, or child. Affected individuals may notice hearing loss as early as the teen years. Other early symptoms may include tinnitus (ringing noise in the ear) and poor balance. Headache, facial pain, or facial numbness, caused by pressure from the tumors, may also occur.

Answer 3

Neurofibromatosis is an autosomal dominant disorder producing tumors along the course of nerves and occasionally resulting in marked soft tissue or bony deformity. Diagnosis is clinical. There is no specific treatment, but tumors can be removed surgically.
Please see the web pages for more details and images on Neurofibromatosis Type 1.

Answer 4

Neurofibromatosis is an autosomal dominant genetic disorder. It encompasses a set of distinct genetic disorders that cause tumors to grow along types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. The tumors can grow anywhere on or in the body.

Joseph Merrick, the Elephant Man, was once considered to have been afflicted with either elephantiasis or neurofibromatosis type I. However, it is now generally believed that Merrick suffered from the very rare Proteus syndrome or perhaps a combination of the two conditions.

Neurofibromatosis was discovered in 1822 by Von Recklinghausen. He wrote on it and published it in Hämochromatose, Tageblatt der Naturforschenden Versammlung

Answer 5

Please ask the health professionals who deal with you, and if you don't feel comfortable doing this ask a friend to come along for support. I am no expert, but have heard that it is a hereditary condition which causes lumps to grow on nerves, and some of these lumps have to be removed due to discomfort/unsightliness/complications. Are you in the UK? If so can NHS Direct help, either by phone or on the internet?
I'm sure there is a group aimed at giving information about this condition.

Answer 6

Nuero= brain; fibroma=fiber; tosis=extraction

So it is clearly a brain disorder having to do with the neural network of fibers that make up the connections between nuerons. From the sound of it, sounds similar to Alzheimer's disease, with the exception that Alzheimer's disease affects older people by neural degradation. In short, it sounds like it has similar characteristics to Alzheimer's disease, but is not naturally occuring with old age. From the sounds of it, it doesn't affect the thought processes themselves, simply the neural network connecting them. It sounds treatable, but if you don't act fast it will likely affect vital processes in the brain. This must be a genetically inherited disease, since it skipped perhaps a few generations (genetic inheritance of a disease has many factors that genetic variations from generation to generation can cancel out, but currently, scientists do not know enough of the human genome to predict it, though such projects as the Human Genome project is making progress). In short, it affects the brain's neural pathways rather than the thoughts connected to them, and (though I may be wrong), it is most likely treatable. The long explanation was simply to explain my logic (since knowledge is useless without knowing how you came to the conclusion of it, and therefore logic is essential to knowledge).

This is a very educated guess from what I learned in High School and my educated logical deductions. (You cannot know what something is unless you know what it's not!!)

Note to readers: Consult a real doctor on this. Diseases, especially mental ones, are rarely as simple to understand as their latin derivations! If you want to know what it is for sure, bear in mind that the diseases name became from the basic description of it, which means that the disease may much more than it's basic description.

Answer 7

Type, "neurofibromatosis", into your Google search-engine and hit, Enter.

I just did and came back with 1,380,000 pages...more information than I need.

Answer 8

This is not really the venue to go into this complex disease at great length. Go to http://www.nfauk.org/ which is the Neurofibromatosis Association (UK).

Answer 9

Here is a website that can answer your questions:
http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm