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Genetic and Rare Diseases Information Center (GARD)

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Russell-Silver syndrome


Other Names for this Disease
  • Silver-Russell dwarfism
  • Silver-Russell syndrome
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Your Question

How can I meet other families with children with Russell-Silver syndrome? My granddaughter was recently diagnosed with this condition. I want to know how I can best support and help her as she grows.

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is Russell-Silver syndrome?

Russell-Silver syndrome is a condition present at birth that involves poor growth, low birth weight, short height, and size differences (asymmetry) of parts of the body.[1] Other signs and symptoms may include poor appetite; low blood sugar (hypoglycemia) as a result of feeding difficulties; a small, triangular face with distinctive facial features; clinodactyly; digestive system abnormalities; delayed development; and/or learning disabilities. The genetic causes of this syndrome are complex and relate to certain genes that control growth. Most cases are not inherited from an affected parent, but occur sporadically (i.e., by chance). In some cases, it is inherited in an autosomal dominant or autosomal recessive manner.[2]
Last updated: 2/11/2014

What are the signs and symptoms of Russell-Silver syndrome?

People with Russell-Silver syndrome may have arms and legs of different lengths, cafe-au-lait spots (birth marks), curving of the pinky toward the ring finger (clinodactyly), delayed bone age, failure to thrive, gastroesophageal reflux disease, kidney problems, low birth weight, poor growth, short arms, short height, stubby fingers and toes, swelling of the esophagus, and a characteristic facial appearance (wide forehead, small triangle-shaped face, and a small, narrow chin). Intelligence may be normal, although some affected people have a learning disability.[1]
Last updated: 2/11/2014

How can I meet other’s with children or grandchildren with Russell-Silver syndrome?

There are a number of advocacy organizations and online discussion forums that make it possible for people with Russell-Silver syndrome, their parents, and grandparents to meet others who have been impacted by this syndrome. We have listed these resources below.

Russell-Silver Syndrome Support
Web site: http://russell-silversupport.org/smf/

RSS-Support yahoo group, an online discussion group for adults with family members or other loved ones with Russell-Silver syndrome. http://health.groups.yahoo.com/group/RSS-Support/

RSS-People yahoo group, an online discussion group for children and adults with Russell-Silver syndrome.
http://groups.yahoo.com/group/RSS-People/

Growth Hormone Deficiency group is an International Rare Disease Support Network (IRDSN) eGroup hosted through yahoo group open for anyone interested in making friends, sharing information and providing support for persons affected by 'Growth Hormone Deficiency.
http://health.groups.yahoo.com/group/Growth_Hormone_Deficiency

MAGIC List is an online group sponsored by MAGIC Foundation and hosted by yahoo group. It exists to support, encourage, and advice on the issues associated with raising children on Growth Hormone Therapy.
http://health.groups.yahoo.com/group/MAGIC_list/

In addition the following organizations provide information and support for people with Russell-Silver syndrome and their families.

Silver-Russell Support Group
c/o Child Growth Foundation
2 Mayfield Avenue
Chiswick London
W4 1PW
Phone: 020 8995 0257; 020 8994 7625
Fax: 020 8995 9075

MAGIC Foundation for Children's Growth
6645 W. North Ave.
Oak Park, IL 60302
Toll-free: 800-3-MAGIC 
Phone: 708-383-0808 
Fax: 708-383-0899 
E-mail: mary@magicfoundation.org 
Website: http://www.magicfoundation.org/  
Russell-Silver syndrome page: http://www.magicfoundation.org/www/docs/112/russel_silver_syndrome.html

Human Growth Foundation (HGF)
997 Glen Cove Avenue
Glen Head, N.Y. 11545
Toll-free: 800-451-6434
Fax: 516-671-4055 
E-mail: hgf1@hgfound.org  
Web site: http://hgfound.org/  

Little People's Research Fund, Inc. (LPRF)
616 Old Edmondson Avenue
Catonsville, MD 21228
Toll-free: 800-232-LPRF
Phone: 410-747-1100 
Fax: 410-747-1374
Web site: http://www.lprf.org/ 

Last updated: 3/29/2013

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