|
The National Craniofacial Association |
| P. O. Box 11082 | * Chattanooga, TN 37401 |
| 800- | 332-2373 |
Miller Syndrome
What is Miller Syndrome?
Miller Syndrome is a very rare genetic condition often referred to as "postaxial
acrofacial dysostosis". This disorder is characterized by distinctive craniofacial
malformations that occur in association with limb abnormalities. Some facial
characteristics include:
Why did this happen?
Research is still being conducted; however, it is believed that Miller Syndrome is
inherited as an autosomal recessive genetic trait. That means that it is passed on when
both parents carry a recessive gene with the Miller Syndrome trait.
Will this happen to children I have in the future?
If both parents carry the gene, there is a good chance that other children would be born
with Miller Syndrome.
What kinds of problems could my child have?
In addition to the craniofacial characteristics common to Miller Syndrome, your child may
have the following problems:
Will my child need surgery?
Several surgeries may be necessary depending on the severity of your child's Miller
Syndrome. Some which may be needed are:
New advances in procedures related to the treatment of symptoms of Miller
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 Syndrome
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, Miller Syndrome shares facial characteristics with the following syndromes:
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Last modified on: Monday, October 26, 2009 03:06 PM
