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Genetic and Rare Diseases Information Center (GARD)

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Neurofibroma


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Your Question

My sister and I have neurofibromas and dermal eccrine cylindromas. Do you have ANY information on these tumors or know where I can get more information? 

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is a neurofibroma?

A neurofibroma is a non-cancerous (benign) tumor that develops from the cells and tissues that cover nerves.[1] Some people who develop neurofibromas have a genetic condition known as neurofibromatosis (NF). There are different types of NF, but type 1 is the most common.
Last updated: 7/20/2015

What is neurofibromatosis type 1?

Neurofibromatosis type 1 (NF1) is a rare, inherited condition that is characterized primarily by changes in skin coloring and the development of multiple benign tumors along the nerves of the skin, brain, and other parts of the body. The severity of the condition and the associated signs and symptoms vary significantly from person to person. NF1 is caused by changes (mutations) in the NF1 gene and is inherited in an autosomal dominant manner. In approximately 50% of cases, the condition is inherited from an affected parent. Other cases may result from new (de novo) mutations in the gene which occur in people with no history of the condition in their family.[2][3] Treatment is based on the signs and symptoms present in each person.[2][4]
Last updated: 7/19/2015

Where can I find more information on neurofibromas?

More information on neurofibromas is available from the following resources:

Children's Hospital of Boston
http://www.childrenshospital.org/az/Site1085/mainpageS1085P0.html

The National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH), has an information page on neurofibromatosis.
http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm

You can also contact NINDS for information on neurofibromatosis:

NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Toll-free:  800-352-9424
Phone: 301-496-5751
TTY: 301-468-5981
E-mail form: http://www.ninds.nih.gov/contact_us.htm
Web site: http://www.ninds.nih.gov/

Last updated: 9/16/2008

What is a cylindroma?

Cylindromas are non-cancerous (benigntumors that develop from the skin.[5] They most commonly occur on the head and neck and rarely become cancerous (malignant).  An individual can develop one or many cylindromas; if a person develops only one, the cylindroma likely occurred by chance and typically is not inherited.[5] They usually begin to form during mid-adulthood as a slow-growing, rubbery nodule that causes no symptoms. The development of multiple cylindromas can be hereditary and is inherited in an autosomal dominant manner; this condition is called familial cylindromatosis.[5]  Individuals with the inherited form begin to develop many, rounded nodules of various size shortly after puberty. The tumors grow very slowly and increase in number over time.[5]
Last updated: 2/18/2015

Where can I find more information on dermal eccrine cylindromas?

An article from eMedicine Journal provides information on cylindromas at the following link. You may need to register to view the article, but registration is free.
http://www.emedicine.com/DERM/topic94.htm
Last updated: 9/16/2008

References
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.