Sotos Syndrome
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What is Sotos Syndrome?
Is there any treatment?
What is the prognosis?
What research is being done?
Organizations
What is Sotos Syndrome?
Sotos syndrome is a rare genetic disorder characterized by excessive physical growth during the first 2 to 3 years of life.
The disorder may be accompanied by mild mental retardation, delayed motor, cognitive, and social development, hypotonia (low
muscle tone), and speech impairments. Children with Sotos syndrome tend to be large at birth and are often taller, heavier,
and have larger heads (macrocrania) than is normal for their age. Symptoms of the disorder, which vary among individuals,
include a disportionately large and long head with a slightly protrusive forehead, large hands and feet, hypertelorism (an
abnormally increased distance between the eyes), and downslanting eyes. Clumsiness, an awkward gait, and unusual aggressiveness
or irritability may also occur. Although most cases of Sotos syndrome occur sporadically, familial cases have also been reported.
Is there any treatment?
What is the prognosis?
What research is being done?
Select this link to view a list of studies currently seeking patients.
Sotos Syndrome Support Association P.O. Box 4626 Wheaton, IL 60189 sssa@well.com http://www.well.com/user/sssa Tel: 888-246-7772 |
The Arc of the United States 1010 Wayne Avenue Suite 650 Silver Spring, MD 20910 Info@thearc.org http://www.thearc.org Tel: 301-565-3842 Fax: 301-565-3843 or -5342 |
March of Dimes Foundation 1275 Mamaroneck Avenue White Plains, NY 10605 askus@marchofdimes.com http://www.marchofdimes.com Tel: 914-428-7100 888-MODIMES (663-4637) Fax: 914-428-8203 |
National Organization for Rare Disorders (NORD) P.O. Box 1968 (55 Kenosia Avenue) Danbury, CT 06813-1968 orphan@rarediseases.org http://www.rarediseases.org Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 203-798-2291 |
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Last updated February 14, 2007