What is Stickler Syndrome?
Stickler Syndrome may be the most common tissue disorder in the United States, possibly affecting 1 in 10,000 persons.
People with Stickler Syndrome have the following characteristics:
- Some degree of cleft palate
- Cataracts and/or retinal detachment at an early age
- A flat face
- A small jaw
- Skeletal abnormalities
Why did this happen?
Doctors believe it is the result of a mutation of the genes during fetal development. Three genes have been identified as causing Stickler Syndrome: COL11A1, COL11A2 (non-ocular), and COL2A1 (75% of Stickler cases). Other genes may also cause Stickler Syndrome that have not yet been identified.
Will this happen to children I have in the future?
Stickler Syndrome tends to run in families. There is a 50% chance of passing it on to future children if you carry the trait.
What kinds of problems could my child have?
In addition to the physical characteristics common to Stickler Syndrome, your child may have the following problems:
- Joint pain
- Hearing loss
- Mitrovalve prolapse
Will my child need surgery?
Depending on the severity of the Stickler Syndrome, your child may need some or all of the following surgeries:
- Repair to the cleft palate
- Surgery to correct retinal detachment and/or to remove cataracts
- Regular hearing and eye exams
- Corrective dentistry due to the small jaw
New advances in procedures to correct Stickler Syndrome continue to be made. 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 sixty-four craniofacial teams located in 27 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 following list 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.
Stickler Involved People
Augusta, KS 67010
Excellent resource! SIP is a network whose purpose is to educate and give support to people affected by Stickler Syndrome.
Be sure to ask about the book, Stickler-The Elusive Syndrome, written by Wendy Hughes, which explains the condition in lay-friendly, positive terms.
http://ghr.nlm.nih.gov/ghr/disease/sticklersyndromeThis US National Library of Medicine site answers many of the genetic questions regarding Stickler 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.
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 Stickler Syndrome.
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.