What is Freeman-Sheldon Syndrome?
Freeman-sheldon syndrome is a very rare genetic condition. Characteristics include:
A small mouth which looks like the person is whistling
A flat face
Contracted muscles of the joints of the fingers and hands
Underdeveloped nose cartilage
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:
A squinting eye
Drooping upper eyelids
Scoliosis (lateral curvature of the spine)
During infancy, vomiting and feeding problems which usually improve with age
Will my child need surgery?
Depending on the severity of Freeman-Sheldon Syndrome, your child may have some or all of the following procedures:
Orthopedic or plastic surgery to correct the hands, feet, and/or mouth
Craniofacial surgery to reshape the frontal bone and increase eyelid openings
Physical therapy to improve hand function
Physical therapy to improve the ability to walk
Repositioning of the thumb to improve hand function
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 many of these teams. 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 Health Law Program
1444 I Street NW, Suite 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.
Worldwide Freeman Sheldon Syndrome Map
A map showing where people with Freeman Sheldon Syndrome live. If you would like to add yourself, please do!