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
- Club feet
- 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
- Hearing loss
- Difficulty walking
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
- Speech therapy
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 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.