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. There are new studies being done to see about the possibilities of there being other genes that could be involved with this syndrome.
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 are minute; however, new genetic studies could change this opinion.
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 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 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
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 Communities
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.
www.treachercollins.co.uk - Not only does Vicki Macklin share her own experience of growing up with Treacher Collins Syndrome, but she also includes a great amount of information about the syndrome and links for resources. One of our favorite parts is her TCS Around the World map located at: www.tcsaroundtheworld.co.uk. Be sure to check it out and add your name!
Treacher Collins Connection
Post Office Box 156
Boston, MA 02131
(704) 336-9013 Judy
Email: Tom - firstname.lastname@example.org
Judy - email@example.com
Amie - firstname.lastname@example.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
Visit Dr. Jeffrey Fearon's informative website that is very lay-friendly and easy to understand. He has excellent information on Crouzon Syndrome and what surgeries are often necessary.
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 Treacher Collins 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.
Headbands for Conductive Hearing Aids
647 Laguna Drive
SimiValley, CA 93065
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.