New advances and procedures concerning Freeman-Sheldon Syndrome are constantly being developed. Be an advocate for your child!
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 Us 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. (Facebook has dozens of private groups specific to conditions. Try searching Facebook with a few different key words such as "craniofacial" or "burn" and find groups of parents and others with similar differences.) The information below will help you get started.
FACES: The National Craniofacial Association
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 (Apply Here). Resources include newsletters, information about craniofacial conditions, and networking opportunities. Contact Us for more information.
Office of Rare Diseases
The Genetic and Rare Diseases Information Center
Excellent web site for finding information on a variety of craniofacial disorders, particularly very rare ones. Information specialists are available to answer your questions. Telephone operation is Monday - Friday, 12 pm to 6 pm Eastern Time. Email or fax requests for information will be answered within 5-10 working days. U.S. Mail requests will be answered within 5-10 working days. NOTE: The center does not give medical advice, provide treatment, or diagnose illness.
Phone: (888) 205-2311
US National Library of Medicine
Your guide to understanding genetic conditions
Outreach Department of the Freeman-Sheldon Parent Research Group, Inc. (FSRG)
Phone: (304-624-1436) or (800)-281-1436
National Health Law Program
Provides extensive information on health care law affecting families with children who have special health care needs.
Phone: (202) 289-7661
Worldwide Freeman Sheldon Syndrome Map
A map showing where people with Freeman Sheldon Syndrome live. If you would like to add yourself, please do!
Children with Facial Difference:
A Parent's Guide
Written by Hope Charkins, MSW. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. Order from Amazon.com if you cannot find it in your local bookstore.