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Costello Syndrome

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Copyright 1997, 2001, 2003



Synonyms of Costello Syndrome
  • Faciocutaneoskeletal Syndrome
  • FCS Syndrome

Disorder Subdivisions



General Discussion
Costello syndrome is an extremely rare disorder that affects multiple organ systems of the body (multisystem disorder). Costello syndrome is characterized by growth delays after birth (postnatal) leading to short stature; excessive, redundant loose skin on the neck, palms of the hands, fingers, and soles of the feet; development of benign (non-cancerous) growths (papillomata) around the mouth (perioral) and nostrils (nares); mental retardation; and/or characteristic facial appearance. Other physical features may include the development of dry hardened skin on the palms of the hands and the soles of the feet (palmoplantar hyperkeratosis), abnormally deep creases on the palms and soles, and/or abnormally flexible joints of the fingers (hyperextensible). There is an increased incidence of congenital abnormalities of the heart and thickening of the heart muscle called a cardiomyopathy. Characteristic craniofacial features may include an abnormally large head (macrocephaly); low-set ears with large, thick lobes; unusually thick lips; and/or abnormally wide nostrils (nares). Most cases of Costello syndrome are isolated with no other affected family members (sporadic). The exact cause of Costello syndrome is unknown.
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Organizations related to Costello Syndrome
  • American Heart Association
    7272 Greenville Avenue
    Dallas TX 75231-4596
    Phone #: 214-373-6300
    800 #: 800-242-8721
    e-mail: Review.personal.info@heart.org
    Home page: http://www.americanheart.org
  • Arc (a national organization on mental retardation)
    1010 Wayne Ave
    Suite 650
    Silver Spring MD 20910
    Phone #: 301-565-3842
    800 #: 800-433-5255
    e-mail: info@thearc.org
    Home page: http://www.thearc.org/
  • Costello Syndrome Family Network
    5813 33rd Street North
    Birmingham AL 35207
    Phone #: 205-616-4159
    800 #: N/A
    e-mail: costellosyndrome@yahoo.com
    Home page: http://www.costellokids.com
  • Genetic and Rare Diseases (GARD) Information Center
    PO Box 8126
    Gaithersburg MD 20898-8126
    Phone #: 301-251-4925
    800 #: 888-205-2311
    e-mail: ordr@od.nih.gov
    Home page: http://rarediseases.info.nih.gov/Default.aspx
  • Human Growth Foundation
    997 Glen Cove Avenue
    Glen Head NY 11545
    Phone #: 516-671-4041
    800 #: 800-451-6434
    e-mail: hgf1@hgfound.org
    Home page: http://www.hgfound.org/
  • International Costello Syndrome Support Group (UK)
    90 Parkfield Road North
    New Moston
    Manchester None M40 3RQ
    Phone #: 44 -161- 682 2479
    800 #: --
    e-mail: c.stone8@ntlworld.com
    Home page: http://www.costellokids.org.uk
  • Little People of America, Inc.
    250 El Camino Real
    Suite 201
    Tustin CA 92780
    Phone #: 714-368-3689
    800 #: 888-572-2001
    e-mail: info@lpaonline.org
    Home page: http://www.lpaonline.org
  • MAGIC Foundation
    6645 W. North Avenue
    Oak Park IL 60302
    Phone #: 708-383-0808
    800 #: 800-362-4423
    e-mail: mary@magicfoundation.org
    Home page: http://www.magicfoundation.org
  • MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
    150 Custer Court
    Green Bay WI 54301-1243
    Phone #: 920-336-5333
    800 #: 877-336-5333
    e-mail: mums@netnet.net
    Home page: http://www.netnet.net/mums/
  • Madisons Foundation
    PO Box 241956
    Los Angeles CA 90024
    Phone #: 310-264-0826
    800 #: N/A
    e-mail: getinfo@madisonsfoundation.org
    Home page: http://www.madisonsfoundation.org
  • March of Dimes Birth Defects Foundation
    1275 Mamaroneck Avenue
    White Plains NY 10605
    Phone #: 914-997-4488
    800 #: 888-663-4637
    e-mail: Askus@marchofdimes.com
    Home page: http://www.marchofdimes.com

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Last modified Wednesday, November 26, 2008