|
The National Craniofacial Association |
| P. O. Box 11082 | * Chattanooga, TN 37401 |
| 800- | 332-2373 |
Nager Syndrome
What is Nager Syndrome?
Nager Syndrome is a condition resulting from problems in the development of the first and
second branchial arches. The first arches produce the nerves and muscles for chewing, the
lower jaw, two of three bones in the middle ear, and a small part of the ears. The second
arches produce the nerves and muscles of facial expression, one bone in the middle ear,
most of the external ears, and parts of the bone above the larynx. Characteristics which
may or may not be present in your child include:
- underdevelopment of the cheek and jaw area
- down-sloping of the opening of the eyes
- lack or absence of the lower eyelashes
- lack of development of the internal and external ear
- possible cleft palate
- underdevelopment or absence of the thumb
- shortened forearms and poor movement in the elbow
Why did this happen?
Because this is such a rare syndrome, it is difficult to conduct genetic research;
however, some initial studies indicate that Nager Syndrome may be passed on from one
parent via a dominant gene.
Will this happen to children I have in the future?
If it is true that the gene is dominant and is passed on from a parent, then the chances
would increase of having another child with Nager Syndrome. Genetic testing is highly
recommended.
What kinds of problems could my child have?
- possible limited range of arm motion
- stomach and kidney reflux
- temporary or long-term hearing loss -- hearing evaluations should be conducted at an early age
- Nager Syndrome does not affect intellect
Will my child need surgery?
Several surgeries may be necessary depending on the severity of your child's Nager
Syndrome. Some which may be needed are:
- tracheostomy to help with breathing
- gastrostomy tube to assure proper nutrition
- craniofacial surgery to the jaw and ears
New advances in procedures related to the treatment of symptoms of Nager
Syndrome are constantly being 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 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.
The Foundation for Nager and Miller Syndromes
DeDe Van Quill, Director
13210 SE 342nd Street
Auburn, WA 98092
(800) 507-FNMS (3667)
International Phone: 001-253-333-1483
email: dede@fnms.net
web site: http://www.fnms.net
Excellent resource!! This is an international support group that serves as an information
clearinghouse that links families together. They have an extensive library of resources
and medical reports and are involved in a genetic research project working to locate the
genes responsible for Miller Syndrome. Twice a year, they publish a very informative
newsletter.
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.
** According to FNMS, Nager Syndrome shares facial characteristics with the following syndromes:
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Last modified on: Monday, October 26, 2009 03:07 PM
