About This Group
I want to spread awareness on what the syndrome is and how everyone can learn more about it. My friend goes to a retreat almost every year in Maryland to meet other people with Treacher Collins and just to have fun. The problem is, 1 in 10,000 babies are born with this and only 100 people went to the...(more) last retreat. So here is some information. I hope it helps people to understand Treacher Collins better.
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.
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.
In addition to the physical characteristics common to Treacher Collins syndrome, someone might 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
some children have abnormally small or absent thumbs
cleft palate often occurs with Treacher Collins Syndrome
Depending on the severity of the Treacher Collins, one might 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
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.
Treacher Collins Foundation
Box 683
Norwich, VT 05055
(800) 823-2055
Website: http://www.treachercollinsfnd.org
This organization provides support, research information, newsletter, and networking opportunities. Founded by the parents of a child with Treacher Collins.
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/contactus.html
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, “Patient Care” 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. Published by Woodbine House, 1996. 1-800-843-7323.
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.
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