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posted: 5/23/2013 5:00 AM

Tumor disorder has no cure

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May is a special month, but not just because of holidays like Mother's Day and Memorial Day. May is also Neurofibromatosis (NF) Awareness Month to the more than 100,000 Americans who live with it.

Many haven't heard of Neurofibromatosis -- but it's more common than muscular dystrophy and cystic fibrosis combined. NF is a genetic disorder causing tumors to grow anywhere along the nervous system-in (or below) the skin, in organs, or in the brain and spinal cord -- anywhere nerves are.

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Although it is genetic, half of all new cases are the result of spontaneous mutation (meaning that it has no known cause). This means that anybody can be born with NF, even if they don't have other family members with it.

The most common type of NF occurs in 1 out of 3,000 births. It can cause symptoms in any organ, including severe pain, disfigurement, deformity, brain tumors, blindness, deafness, learning disabilities, memory loss, heart disease, orthopedic problems, and cancer. That's why it affects us all, because we all know someone dealing with these health problems.

NF has directly impacted my family because my son has it. Although his case is mild, all that can change suddenly. Currently, there is no treatment stopping tumors from growing; only symptoms can be treated. There is also no cure for NF.

That's why May is special for people dealing with NF. It's a time for those of us fighting this disorder to come together and focus on NF for a good reason: to raise awareness of it. Hopefully, awareness will lead to more research with research leading to a cure.

If you would like to learn more about NF, its effects, and ways to help find a cure for this devastating disorder, visit NF Midwest (www.nfmidwest.org) and the NF Network (www.nfnetwork.org).

Patricia Bukowski

Round Lake

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