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Genetic ailment is subject at Kiwanis meeting

Friday, July 20, 2012

Neurofibromatosis, a genetic ailment that affects about one in 4,000 births in some form, was described to the Monett Kiwanis Club at last week's meeting.

Gina Tullos, of Monett, spoke from her experience in helping others with the condition. May was Neurofibromatosis Awareness Month, and Tullos said the public generally knows little about the ailment.

Neurofibromatosis is a neurological condition wherein pigmented benign tumors can grow under the skin. The most common result is freckling or "cafe-au-lait" spots that can cover large portions of the body.

Around one in four people with the condition will develop larger growths that can expand and affect adjacent parts of the body. Larger, more painful tumors may be removed by surgery.

In more severe cases, neurofibromas may grow as lumps on the skin, compounding into disfigurement. Some nodules may grow in the nervous system. The rarer form of the disease may manifest itself later in life with benign tumors growing along the cranial nerve which connects the brain and the inner ear. Such tumors can result in seizures, loss of hearing and balance and vision changes.

Finding treatment for the condition has been difficult. Tullos said only recently have doctors knowledgeable about the ailment joined the staff at Barnes-Jewish Hospital in St. Louis. Prior to that, Midwest patients had to travel to Illinois to receive help.

Patients suffering from the condition may have a variety of complications, Tullos said. They may not be able to eat much and require meals every two hours. Children with the most common form of neurofibromatosis can have bone deformities in their lower leg, forearm or eye sockets. Prompt treatment is needed to correct problems, although some limbs may require amputation. Some hyperintensive spots that show up in the brain scans of children often disappear in adulthood.

Tullos said medical science continues to expand understanding of neurofibromatosis. A number of experimental drugs are in use and are often very expensive.

Less severe forms of neurofibromatosis may result in learning disabilities in children with normal intelligence. Many of these children can be successfully treated with medication and behavioral therapy

Tullos was introduced by program chairperson Charlene Dart. Kiwanis president Eric Kean presided at the meeting.

The Monett Kiwanis Club meets at noon on Tuesdays for a meal and a program, usually at Happy House restaurant.



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