Linear nevus sebaceous syndrome
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Linear nevus sebaceous syndrome is a rare oculoneurocutaneous disorder. Oculoneurocutaneous means that the syndrome involves the eyes (oculo-), central nervous system (neuro-) and skin (cutaneous).[3] Symptoms may include seizure, intellectual disability, linear sebaceous nevus of Jadassohn (a congenital hairless plaque that is usually found on the scalp, face, or neck),[1][2] hemimegalencephaly (abnormal enlargment of one side of the brain), eye abnormalities, skeletal deformities, heart defects, and an increased risk for cancer.[1] This syndrome is sporadic, meaning that it occurs randomly by chance.
References
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1. Terenzi V, Idrizzi E, Buonaccorsi S, Leonardi A, Pellacchia V, Fini G. Nevus Sebaceus of Jadassohn. Craniofac Surg. 2006 Nov.
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2. Santibanez-Gallerani A, Marshall D, Duarte AM, Melnick S, Thaller S. Should nevus sebaceus of Jadassohn in children be excised? A study of 757 cases, and literature review. J Craniofac Surg. 2003 Sep.
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Lien SH, Hsu ML, Yuh YS, Lee CM, Chen CC, Chang PY, Chou CY. . Archives of Disease in Childhood Fetal and Neonatal Edition. 2005;:. Available at: http://fn.bmj.com/cgi/content/full/90/4/F315. May 6, 2008.
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The New Zealand Dermatolgical Society's Web site has information on nevus sebaceous, including information on linear nevus sebaceous syndrome. Click on the link above to view this information page.
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eMedicine provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free
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The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. Click on the link to view information on this topic.
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The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Linear nevus sebaceous syndrome. Click on the link to go to OMIM and review these resources.
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Orphanet is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge. Click on the link to read information on this topic.
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PubMed is a searchable database of medical literature and lists journal articles that discuss Linear nevus sebaceous syndrome. Click on the link to view a sample search on this topic.
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The website TheDoctorsDoctor provides a web page on nevus sebaceus that includes information on linear nevus sebaceus syndrome that you may find helpful. Click on TheDoctorsDoctor to view the information page.
- Support Groups (Found: 7 Resources)
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National Dissemination Center for Children with Disabilities
P.O. Box 1492
Washington, DC 20013
Toll-free: 1-800-695-0285
Fax: 202-884-8441
Email: nichcy@aed.org
Web site: http://www.nichcy.org/
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Nevus Outreach, Inc.
600 SE Delaware Ave., Suite 200
Bartlesville, OK 74003
Toll-free Hotline: 877-4-A-NEVUS (877-426-3887)
Phone: (918) 331-0595
Fax: (281) 417-4020
Web: http://www.nevus.org/
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MUMS National Parent to Parent Network puts parents in touch with other parents who have children with this condition or similar symptoms.
MUMS National Parent to Parent Network
150 Custer Court
Green Bay, Wisconsin 54301-1243
Toll-free: 877-336-5333 (Parents only please)
Telephone: 920-336-5333
Fax: 1-920-339-0995
E-mail: mums@netnet.net
Web site: http://www.netnet.net/mums/
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