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Allan Herndon Syndrome

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Synonyms of Allan Herndon Syndrome
  • AHDS
  • Allan-Herndon-Dudley Mental Retardation
  • Allan-Herndon-Dudley Syndrome
  • X-Linked Mental Retardation with Hypotonia

Disorder Subdivisions



General Discussion
Allan-Herndon syndrome is an extremely rare inherited disorder that may be characterized by severe mental retardation, an impaired ability to form words and speak clearly (dysarthria), diminished muscle tone (hypotonia), and/or movement abnormalities.

With the exception of poor muscle tone, most affected infants appear to develop normally during the first months of life. However, by about six months of age, affected infants may seem weak and have an inability to hold up the head. Due to hypotonia, severely reduced motor development, and other abnormalities, affected children may not develop the ability to walk or may walk with difficulty. Associated features often include underdevelopment (hypoplasia) and wasting (atrophy) of muscle tissue; weakness and stiffness of the legs (spastic paraplegia) with exaggerated reflexes (hyperreflexia); relatively slow, involuntary, purposeless, writhing movements (athetoid movements); and/or other movement abnormalities. Affected individuals may also have abnormalities of the skull and facial (craniofacial) region. Allan-Herndon syndrome is thought to be inherited as an X-linked recessive trait and therefore is typically fully expressed in males only.
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Organizations related to Allan Herndon Syndrome
  • Genetic and Rare Diseases (GARD) Information Center
    PO Box 8126
    Gaithersburg MD 20898-8126
    Phone #: 301-519-3194
    800 #: 888-205-2311
    e-mail: gardinfo@nih.gov
    Home page: http://www.genome.gov/10000409
  • 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/
  • NIH/Nat'l Institute on Deafness & Other Communication Disorders Information Clearinghouse
    1 Communication Ave
    Bethesda MD 20892-3456
    Phone #: 301-402-0900
    800 #: 800-241-1044
    e-mail: nidcdinfo@nidcd.nih.gov
    Home page: http://www.nidcd.nih.gov
  • The 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/
  • WE MOVE (Worldwide Education and Awareness for Movement Disorders)
    204 West 84th Street
    New York NY 10024
    Phone #: 212-875-8312
    800 #: N/A
    e-mail: wemove@wemove.org
    Home page: http://www.wemove.org

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Last modified Wednesday, November 26, 2008