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 Disability Information - Cornelia de Lange Syndrome (CdLS)

 

General Information

Education & Classroom Accommodations

Michigan Resources, Support Groups, Listservs & Websites

National Resources & Websites

Articles Related to this Disability

Medical Information

Books & Videos

Personal Home Pages & Websites

 

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 General Information

Cornelia de Lange Syndrome (CdLS) is a congenital syndrome, meaning it is present from birth. Most of the signs and symptoms may be recognized at birth or shortly thereafter. A child need not demonstrate each and every sign or symptom for the diagnosis to be made.
 
As with other syndromes, individuals with CdLS strongly resemble one another. Common characteristics include: low birth weight (often under five pounds), slow growth and small stature, and small head size (microcephaly). Typical facial features include thin eyebrows which frequently meet at midline (synophrys), long eyelashes, short upturned nose and thin, down-turned lips.
 
Other frequent findings include excessive body hair (hirsutism), small hands and feet, partial joining of the second and third toes, incurved fifth fingers, gastroesophageal reflux, seizures, heart defects, cleft palate, bowel abnormalities, feeding difficulties, and developmental delay. Limb differences, including missing limbs or portions of limbs, usually fingers, hands or forearms, are also found in some individuals.

 Education & Classroom Accommodations
 
 Michigan Resources, Support Groups, Listservs & Websites

Cornelia de Lange Syndrome Awareness Day
Office of the Governor
http://www.michigan.gov/gov/0,1607,7-168-22678_25488-71950--,00.html
Resolved, That I, Jennifer M. Granholm, Governor of the State of Michigan, do hereby proclaim May 10, 2003, as Cornelia de Lange Syndrome Awareness Day in Michigan.
 

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 National Resources & Websites

Cornelia de Lange Syndrome Forum
Our goal is to provide emotional support and fellowship among parents and caregivers of children and adults with CdLS. Here we can discuss their accomplishments and defeats, knowing we can find understanding, encouragement, or a shoulder to cry on. We can also get some idea of how others address specific problems/concerns with feeding, learning, schools, techniques and equipment. We are by no means a forum for dispensing medical advice or diagnosis.
 

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 Articles Related to this Disability

Cornelia de Lange syndrome associated with cecal volvulus: report of a case
Masumoto K, Izaki T, Arima T.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=

Abstract&list_uids=21333161
Cornelia de Lange syndrome is known to be occasionally associated with gastrointestinal malformation. However, the occurrence of cecal volvulus in such anomalies is very rare. We report a 15-y-old Japanese boy with Cornelia de Lange syndrome associated with a cecal volvulus secondary to non-fixation of the cecum and ascending colon.
 

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 Medical Information

 

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 Books & Videos
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 Personal Home Pages & Websites
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NOTE: (ALL RESOURCES PRE-IDEA 2004 ARE FOR INFORMATIONAL/HISTORICAL RESEARCH PURPOSES ONLY)