New advances and procedures concerning Crouzon Sydrome are constantly being developed. Be an advocate for your child!
CROUZON SYNDROME
What is Crouzon Syndrome?
Crouzon Syndrome is a condition resulting from premature fusion of the sutures of the skull and deformity of the skull. Characteristics include:
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Skull is prematurely fused and unable to grow normally (craniosynostosis)
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Bulging wide-set eyes due to shallow eye sockets (ocular proptosis)
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A small underdeveloped upper jaw (maxilla)
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Downward slanting eyelids
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Curved, parrot-like nose
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High, narrow, arched palate Crouzon Syndrome with Acanthosis Nigricans (AN) is found in an estimated 5-10% of all Crouzon cases
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In addition to the facial characteristics, it includes some of the following:
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Darkened, rough patches of skin found in the folds of the body (armpits, neck, groin, elbows, knees, chin/mouth area, eye area, or stomach)
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Signs of this begin between the ages of 2-4.
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AN generally does not advance after the age of 12. So, the texture and color stay the same from then on.
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Why did this happen?
There is no link between anything the mother did or did not do while she was pregnant and the occurrence of Crouzon Syndrome. Doctors believe it is caused by changes in the gene (FGFR2) mapped to chromosome 10. Crouzon Syndrome with Acanthosis Nigricans is caused by changes in the gene (FGFR3) mapped to chromosome 4. The cause of the change is not currently known.
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Will this happen to children I have in the future?
If you have Crouzon Syndrome, there is a 50% chance that other children you have will be born with it. If both parents are unaffected, the risk is very small that it will occur in other children.
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What kinds of problems could my child have?
In addition to the physical characteristics common to Crouzon Syndrome, your child may have the following problems:
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Dental problems due to crowded teeth and a narrow palate
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Poor vision
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Ear disease and hearing loss in about 50% of children
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Difficulty breathing due to small airway
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Possible fluid on the brain (hydrocephalus)
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Will my child need surgery?
Depending on the severity of Crouzon Syndrome, your child may have some or all of the following surgeries:
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Frontal orbital advancement to allow the skull to grow properly and to increase the size of the eye sockets
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Jaw surgery
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Orthodontics work
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Surgical advancement of the mid-face
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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 many of these teams. This is by no means a comprehensive list of all the craniofacial teams.
Please Contact Us for details.
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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. (Facebook has dozens of private groups specific to conditions. Try searching Facebook with a few different key words such as "craniofacial" or "burn" and find groups of parents and others with similar differences.) The information below will help you get started.
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FACES: The National Craniofacial Association
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 (Apply Here). Resources include newsletters, information about craniofacial conditions, and networking opportunities. Contact Us for more information.
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Office of Rare Diseases
The Genetic and Rare Diseases Information Center
Excellent web site for finding information on a variety of craniofacial disorders, particularly very rare ones. Information specialists are available to answer your questions. Telephone operation is Monday - Friday, 12 pm to 6 pm Eastern Time. Email or fax requests for information will be answered within 5-10 working days. U.S. Mail requests will be answered within 5-10 working days. NOTE: The center does not give medical advice, provide treatment, or diagnose illness.
Phone: (888) 205-2311
Website: rarediseases.info.nih.gov/diseases/6206/crouzon-syndrome
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US National Library of Medicine
Your guide to understanding genetic conditions
Website: ghr.nlm.nih.gov/condition/crouzon-syndrome
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National Health Law Program
Provides extensive information on health care law affecting families with children who have special health care needs.
Phone: (202) 289-7661
Website: healthlaw.org/
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Seattle Children’s Hospital & Regional Medical Center, Crouzon Syndrome
Phone: (206) 987-2188
Website: www.seattlechildrens.org/conditions/crouzon-syndrome/
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American Cleft Palate Association Family Services
Phone: (800) 242-5338 or (919) 933-9044
Website: cleftline.org/
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Support Network
Online network designed to offer support to individuals and families affected by Crouzon. This group offers online discussions and periodic meetings and social events.
Website: www.crouzon.org/
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Worldwide Crouzon Map
A map showing where people with Crouzon live. If you would like to add yourself, please do!
www.diseasemaps.org/crouzon-syndrome/
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Suggested Reading
Children with Facial Difference:
A Parent's Guide
Written by Hope Charkins, MSW. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. Order from Amazon.com if you cannot find it in your local bookstore.
Babyface:
A Story of Heart and Bones,
By Jeanne McDermott, the mom of a son born with Apert Syndrome. This book highlights the first two years of Nate's life, and expresses the thoughts and feelings that are a part of the journey of having a child who is born with a rare disorder. This is a book you will want to share with your friends and family members. The book can be found at Amazon.com.
