The National Craniofacial Association
P. O. Box 11082	* Chattanooga, TN 37401
800-	332-2373

Treacher Collins Syndrome

What is Treacher Collins Syndrome?

Treacher Collins Syndrome, also called mandibulofacial dysostosis, affects the head and face. Characteristics include:

• down-slanting eyes
• notched lower eyelids
• underdevelopment or absence of cheekbones and the side wall and floor of the eye socket
• lower jaw is often small and slanting
• forward fair in the sideburn area
• underdeveloped, malformed and/or prominent ears

Most children with Treacher Collins have normal development and intelligence; however, it is important that there be early hearing tests. Most children with Treacher Collins Syndrome benefit from early intervention speech and language programs.

Why did this happen?

Treacher Collins Syndrome is believed to be caused by a change in the gene on chromosome 5, which affects facial development. About 40 percent of the time, one parent has the Treacher Collins Syndrome gene. Geneticists can now determine whether the Treacher Collins gene is a new mutation or one that has been passed on.

Will this happen to children I have in the future?

Treacher Collins Syndrome may be inherited from a parent affected with Treacher Collins. There is a 50% change of passing it on if you have it. It may also occur in children of unaffected parents. The chances of Treacher Collins occurring again in children of unaffected parents is minute.

What kinds of problems could my child have?

In addition to the physical characteristics common to Treacher Collins syndrome, your child may have some or all of the following problems:

• breathing problems and/or eating difficulties
• most children have a 40% hearing loss in each ear due to abnormalities of the outer and middle ear, which conduct sound to the nerve endings
• the eyes have a tendency to dry out, which can lead to infection
• cleft palate often occurs with Treacher Collins Syndrome

Will my child need surgery?

Depending on the severity of the Treacher Collins, your child may need some or all of the following procedures:

• a conductive hearing aid
• correction of the cleft palate
• repair of the sidewall and floor of the eye socket
• repair of the cheekbones
• repair of the eyelid notches
• correction of the undeveloped jaw and chin
• surgery to correct the beak-like nose
• reconstruction of the ears

New advances in the procedures to treat Treacher Collins 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 on possible locations closer to you.

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
(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.

YahooGroups TCS Discussion Community - We encourage you to join this very active and supportive online discussion group.

www.treachercollins.org - This link will take you to a very informative website that includes personal stories, general Treacher Collins information, and an excellent listing of resources.

Treacher Collins Connection
Post Office Box 156
Boston, MA  02131
(704) 545-1921  Judy
Email:  Tom  tom@tcconnection.org
           Judy  judy@tcconnection.org
           Amie amie@tcconnection.org
Website:  http://www.tcconnection.org
Provides support and valuable information. Also hosts a yearly conference.

The Craniofacial Center
Dr. Jeffery A. Fearon, MD, FACS, FAAP, Director
7777 Forest Lane, Suite C-700
Dallas, TX  75230
(972) 566-6464
Email:  cranio700@aol.com
Visit Dr. Jeffrey Fearon's informative website that is very lay friendly and easy to understand.

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 Goldenhar syndrome.

Johns Hopkins Center for Craniofacial Development & Disorders
Web site: http://www.hopkinsmedicine.org/craniofacial
At the web site, click on the "Family" button, "Education" button, and go to the section on Treacher Collins 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.

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.

Headbands for Conductive Hearing Aids
Jodi Gonzalez
647 Laguna Drive
SimiValley, CA 93065
(805) 579-0538
Frustrated by the traditional headbands that were available on the market, this mother of a child with Treacher Collins has developed a new type of headband for her child's hearing aid. She will make these for your child at no charge.

Last modified on: Thursday, March 22, 2007 04:38 PM