| Crouzon Syndrome is a congenital disease (starts
developing from birth) produced by a genetic mutation at the moment of
conception. It is only hereditary from the person who has suffers the syndrome. Crouzon Syndrome produces atrophy (slowness) of the growth of several bones in
the skull, including the superior maxillary, while the inferior grows at the
normal rate. This atrophy produces a disfiguration to the face, so a cosmetic
reconstruction is necessary.
On the other hand, the lack of synchrony in the growing of the two maxillaries imposes the necessity of orthodontic treatment. The surgery the people suffering from this syndrome must undergo is called ‘Monoblock Advancement’ and in laymen terms it involves rebuilding the face and skull by leveling the cranium, drawing the ocular orbits near to each other and generating a forward growth of several millimeters which naturally does not occur. This rare surgery is done mostly by Doctor Fernando Ortiz Monasterio in Mexico City, specialized in reconstructive surgery of children suffering this specific syndrome. If you want to contact the Doctor Fernando Ortiz Monasterio and verify or ask for medical details about Clarita’s case you can write to his email at fortizm@prodigy.net.mx. Although it is a very uncommon syndrome, you can find additional information on the Internet. Similar stories and frequently asked questions can be found at the 'Crouzon Support Network' webpage at http://www.crouzon.org/ (currently unavailable). There is much information online if you do a search, for example click here for a Google search.
There is a very active and interesting internet community of
families with members with the syndrome at this address: Some web pages with additional information are: http://www.headlines.org.uk/Crouzon.htm http://www.forwardface.org/misc_text/conditions/crouzon.htm at http://www.forwardface.org
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