|
The National Craniofacial Association |
| P. O. Box 11082 | * Chattanooga, TN 37401 |
| 800- | 332-2373 |
Saethre-Chotzen Syndrome
What is Saethre-Chotzen Syndrome?
Saethre-Chotzen Syndrome is a very rare disorder characterized by the following traits:
Why did this happen?
Saethre-Chotzen is usually found in several generations of a family, as it is an inherited
disorder; however, because the features are often so minor, many times it is never
diagnosed. It is an "autosomal dominant" disorder caused by a change or
"mutation" in only one copy of a gene from one biologic parent. The altered gene
is located on chromosome 7.
Will this happen to children I have in the future?
Because it is an "autosomal dominant" disorder, there is a 50% chance of passing
on Saethre-Chotzen to the child.
What kinds of problems could my child have?
In addition to the physical characteristics, growth delays may occur, leading to less than
average adult height.
Will my child need surgery?
Very often, the physical characteristics are so mild that no surgical treatment is
necessary. Facial appearance tends to improve as the child grows; however, the following
may by necessary:
New advances and research into the problems connected to Saethre-Chotzen
Syndrome are constantly occurring. Be an advocate for your child!
How do I get help for my child?
Your child should be treated by a qualified craniofacial medical team at a craniofacial center. Currently, FACES
has information on thirty-two craniofacial teams located in 20 states, the District of
Columbia, and Canada. This is by no means a comprehensive list of all the craniofacial
teams. Please contact FACES for details.
Am I alone?
No! There are many families and organizations who will be glad to talk with you and help
you with information and support. Don't forget books, videos, and websites. The listing on
the next page will get you started.
FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
(800) 332-2373
email: faces@faces-cranio.org
We provide financial support for non-medical expenses to patients traveling
to a craniofacial center for treatment. Eligibility is based on financial and medical
need. Resources include newsletters, information about craniofacial conditions, and
networking opportunities.
Headlines, Craniofacial Support
44 Helmsdale Road
Leamington Spa, CV32 7DW
United Kingdom
Email: SJMoody@compuserve.com
Website: http://www.headlines.org.uk
This excellent international organization has a booklet on Saethre-Chotzen Syndrome, as
well as a support network of families dealing with this syndrome. They also have a number
of journal articles relating to Saethre-Chotzen.
Alliance of Genetic Support Groups
4301 Connecticut Avenue - Suite 404
Washington, DC 2008
(800) 336-4363
email: info@geneticalliance.org
website: http://www.geneticalliance.org
Request information about Saethre-Chotzen Syndrome.
MUMS
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Toll free (877) 336-5333
http://www.netnet.net/mums/
This organization helps you get in touch with parents in your area whose
children also have Saethre-Chotzen Syndrome.
Johns Hopkins Center for Craniofacial Development &
Disorders
Web site: http://www.hopkinsmedicine.org/craniofacial
At the web site, click on the "Family" button, "Patient Care" button,
and go to the section on Saethre-Chotzen.
National Institute of Dental and Craniofacial Research
National Institute of Health
Bethesda, Maryland 20892
(301) 496-3571
Fax: (301) 402-2185
Web site: http://www.nidcr.nih.gov/cranio/
Excellent web site for finding information on a variety of craniofacial disorders,
particularly very rare ones. Go to the Disease/Disorder link and then to Saethre-Chotzen.
If you do not have internet access, call or fax the office and make your requests.
National Health Law Program
1101 14th Street, NW, Suite 405
Washington, DC 20005
(202) 289-7661
Website: http://www.healthlaw.org
Provides extensive information on health care law affecting families with children
who have special health care needs.
Children with Facial Difference: A Parent's Guide.
Written by Hope Charkins, MSW.
Order from Amazon.com
if you cannot find it in your local bookstore.
Excellent resource for parents to help them cope with medical, emotional,
social, educational, legal, and financial challenges presented by facial differences of
their children.
Let's Face It
Email: faceit@umich.edu
Excellent Resource! Very comprehensive listing of resources available for people
with facial differences.
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Last modified on: Thursday, March 22, 2007 04:40 PM
