|
The National Craniofacial Association |
| P. O. Box 11082 | * Chattanooga, TN 37401 |
| 800- | 332-2373 |
Stickler Syndrome
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, and
COL2A1. 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
- scoliosis
- 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 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 following
list will get you started:
FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
(800) 332-2373
Email: faces@faces-cranio.org
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
15 Angelina
Augusta, KS 67010
(316) 259-5194
Email: houch@southwind.net
Website: http://www.sticklers.org
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.
Stickler Syndrome Web Site
http://members.aol.com/dhawley/stickler.html
Information on this syndrome, as well as directions to participate in an internet list
serve discussion group. Excellent support!
Douglas Wilkin, PhD
Medical Genetics Branch
National Human Genome Research Institute
National Institutes of Health
10 Center Drive MSC 1267
Building 10 - Room 3D45
Bethesda, MD 20892-1267
(301) 435-3497
(301) 435-3495 (fax)
Email: dwilkin@nhgri.nih.gov
Dr. Wilkin is conducting a 5-year study of Stickler Syndrome to connect the molecular
(laboratory) findings with clinical (symptoms). For further information, please
contact Dr. Wilkin.
http://ghr.nlm.nih.gov/ghr/disease/sticklersyndrome
This site answers many of the genetic questions regarding Stickler Syndrome.
National Health Law Program
1101 14th Street, NW, Suite 405
Washington, DC 20005
(202) 289-7661
Website: http://www.healthlaw.org
Provides extensive information on health care law affecting families with children
who have special health care needs.
MUMS
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Toll free (877) 336-5333
http://www.netnet.net/mums/
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 present by facial differences of
their children.
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Last modified on: Tuesday, October 23, 2007 04:55 PM
