5 Facts About Neurofibromatosis

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Fact #1: Simply stated, neurofibromatosis causes tumors to grow on nerve tissue.

Neurofibromatosis, also called Recklinghausen’s disease, is a genetic disorder that disturbs cell growth in the nervous system, which leads to tumors developing anywhere from your child's brain to the spinal cord or nerves. The definition of neurofibromatosis (NF) may seem scary, but it's not quite as bad as it sounds. According to the Mayo Clinic, these tumors are usually benign, meaning noncancerous. Additionally, neurofibromatosis normally only causes mild symptoms such as light-brown spots on the skin, freckling in the armpit or groin area, and small bumps on the iris. 

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Fact #2: There are three types of neurofibromatosis.

Type 1 usually begins while the patient is a child and may even cause symptoms beginning at birth, according to the National Institutes of Health. It can cause skin changes and bone deformations. According to the Children's Tumor Foundation, this type is the most common.

Type 2 usually starts while the patient is a teenager. It may cause hearing and balance problems. According to the Children's Tumor Foundation, this type is rarer than the first. While Type 1 occurs once for every 3,000 births, Type 2 only occurs once in every 25,000 births.

Type 3 is called schwannomatosis. This type is the rarest, but it causes very intense pain. According to the Children's Tumor Foundation, this type occurs once in every 40,000 births.


Fact #3: It's a genetic disorder. 

There's nothing you can do—or fail to do—that will cause your child to develop NF. If your child is diagnosed with neurofibromatosis, don't blame yourself! There truly was nothing you could have done. Your focus now should be on what is within your control, which is keeping your child healthy and managing complications as they come. 

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Fact #4: There's no cure, but there is treatment.

While there is no way to end NF currently, there are plenty of ways to treat the disease, depending on the severity of your child's condition. Some options might be radiation, surgery to remove tumors, or medicine, according to the National Institutes of Health.

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Fact #5: Possible signs of neurofibromatosis are easy to spot.

According to Medical News Today, even the mildest type of NF has visible signs. Watch out for café-au-lait birthmarks (which are coffee-colored), an outbreak of freckles in a strange location, lumps under the skin, and small brown spots in the iris of the eye. 

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While taking on neurofibromatosis may be scary, the sooner you seek treatment for your child, the better the outcome will be. 

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5 Facts About Neurofibromatosis

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