|P. O. Box 11082||* Chattanooga, TN 37401|
What is Freeman-Sheldon Syndrome?
Freeman-sheldon syndrome is a very rare genetic condition. Characteristics include:
Why did this happen?
Little is known about why Freeman-Sheldon Syndrome occurs. Doctors do know it is a genetic condition which can run in some families. There is nothing that the mother did or did not do during pregnancy that caused this condition.
Will this happen to children I have in the future?
Since so little is known about this syndrome, your best course would be to receive genetic counseling. Freeman-Sheldon Syndrome can follow either a dominant or recessive inheritance pattern.
What kinds of problems could my child have?
In addition to the physical characteristics common to Freeman-Sheldon Syndrome, your child may have the following problems:
Will my child need surgery?
Depending on the severity of Freeman-Sheldon Syndrome, your child may have some or all of the following procedures:
New advances in procedures to treat the symptoms of Freeman-Sheldon Syndrome are constantly being developed. 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 below will get you started.
FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
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.
Outreach Department of the Freeman-Sheldon Parent Research Group, Inc. (FSRG)
1701 Hamill Ave.
Clarksburn, VW 26301
Phone: 304-624-1436, 800-281-1436 (WV only)
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Toll free (877) 336-5333
This organization helps you get in touch with parents
in your area whose children also have Freeman-Sheldon Syndrome.
National Health Law Program
1444 I St., NW, Ste. 1105
Washington, DC 20005
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.
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Last modified on: Thursday, February 10, 2011 04:42 PM