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NF Fact of the Day May 25th

Reggie and MomThe National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutes of Health (NIH), is the primary federal supporter of research on neurological diseases. The Institute sponsors basic studies aimed at understanding normal and abnormal development of the brain and nervous system, as well as clinical trials to improve the diagnosis and treatment of neurological disorders. In conjunction with the other NIH institutes, the NINDS supports research focused on finding better ways to prevent, treat, and ultimately cure the neurofibromatoses.

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NF Fact of the Day May 24th

Reggie and PJClinical genetic testing can confirm the presence of a mutation in the NF1 gene. Prenatal testing for the NF1 mutation is also possible using amniocentesis or chorionic villus sampling procedures. Genetic testing for the NF2 mutation is sometimes available, but is accurate only in about 65 percent of those individuals tested. Prenatal or genetic testing for schwannomotosis currently does not exist.

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NF Fact of the Day May 23rd

Reggie at the Houston Roller DerbyThere is no currently accepted medical treatment or drug for schwannomatosis, but surgical management is often effective. Pain usually subsides when tumors are removed completely, although it may recur should new tumors form. When surgery isn’t possible, ongoing monitoring and management of pain in a multidisciplinary pain clinic is advisable.

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NF Fact of the Day May 22nd

Reggie in CanadaAnyone with schwannomatosis experiences some degree of pain, but the intensity varies. A small number of people have such mild pain that they are never diagnosed with the disorder. Most people have significant pain, which can be managed with medications or surgery. In some extreme cases, pain will be so severe and disabling it will keep people from working or leaving the house.

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NF Fact of the Day May 21st

Reggie and Colin HayAbout one-third of individuals with schwannomatosis have tumors limited to a single part of the body, such as an arm, leg, or a segment of the spine. Some people develop many schwannomas, while others develop only a few.