Neurofibromatosis is a medical condition that causes skin and bone abnormalities by allowing tumors to grow in nerve tissues. Also referred to as NF, neurofibromatosis is often diagnosed in children ranging from 3 to 16 years of age. Although some children may become disabled from the disease, most children can live a fairly normal life. Often times, a child with NF may have a learning disability, although the severity can vary from child to child.
NF is a neurocutaneous syndrome that is inherited from the parents. Passed down through the genes, the NF affects the nerves, spinal cord, brain, skin and possibly other systems throughout the body. NF consists of tumors that are called neurofibromas. Neurofibromas grow along the nerves in our bodies and on and under our skin. When neurofibromas grow bigger they press on important areas in our body. This causes problems in the way these areas function.
There are two types of neurofibromatosis, NF1 and NF2. The most common of the two types is the NF1 and its found in about one out of 4,000 children. This type of neurofibromatosis is also referred to as Recklinghausen disease. With NF1 a child may also show signs of skeleton abnormalities. Thinning or overgrowth of the bones in the legs or arms or scoliosis of the spine may be present.
The second form, NF2, causes tumors like bilateral acoustic neurofibroma. This condition is rarer than NF1 and is only seen in about one out of 50,000 births. People who have this type of neurofibromatosis often have benign (non-cancerous) tumors on the nerves in their ears. This can cause hearing loss and balance problems.
Most of the tumors caused by neurofibromatosis are benign, although about 3-5% of the tumors can eventually become cancerous if not removed.
The first signs of NF are typically found in childhood. NF1 tends to be seen at a younger age while NF2 tends to be found a little later. Often the condition presents itself during the pubescent years with a spot on the skin known as a brown café au lait spot. Although common during puberty, these spots can show up at anytime during a child’s life. The spot does not cause pain or itching and are usually harmless to the affected person. They can appear on any part of the body but usually when a child has at least 5 of these spots and they are at least a ½ in diameter is when the condition may be more noticeable. One of the first signs of NF2 can involve hearing loss. Often noticed in the later teen years, tumors growing on the auditory nerves can cause problems with hearing and balance.
Once diagnosed with NF it is possible to start treating the symptoms. This may involve removing neurofibromas, getting help for children suffering from learning disabilities and treating other complications that may arise. Other complications may include high blood pressure, seizures, speech impairments, optic nerve tumors, and scoliosis. If a person suffering from NF ends up with a cancerous neurofibroma, then surgery, radiation and chemotherapy may become necessary treatments. For those with NF2 that have auditory nerve tumors, it can become necessary to remove these tumors. Unfortunately this can cause deafness in that ear.
If you think your child may have a form of NF you should see your child’s pediatrician as soon as possible. Some of the best results come from an early diagnoses and early treatment. Although neurofibromatosis can cause challenges throughout a person’s lifetime, it can be dealt with and a person suffering from the disease can live a fairly normal life.
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