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CCMS

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If you have happened upon my blog because you searched Cerebrocostomandibular Syndrome, please email me at juliebleach@yahoo.com!!  My daughter, Abby, has this syndrome.  I love to meet other CCMS families and hopefully be an encouragement to you if you're new to this road.

Below is some of the more helpful information I have found related to CCMS. 

http://www.jpgmonline.com/article.asp?issn=0022-3859;year=2000;volume=46;issue=4;spage=268;epage=71;aulast=Hosalkar
A case study done on the oldest known survivor

http://www.kumed.com/healthwise/healthwise.aspx?DOCHWID=nord508
University of Kansas website with a decent explanation of CCMS with some helpful resources.

http://www.veptr.com/
Website explaining the VEPTR rib, an expandable titanium rib that is sometimes necessary for the rib gaps.

http://www.chop.edu/doctors/campbell-robert-m.html
Dr. Campbell, the creator of the VEPTR rib.  (As of the time of this posting, the rib surgery is only done in 7 hospitals worldwide.)

http://www.childrenshospital.org/cfapps/research/data_admin/Site2253/mainpageS2253P10.html

A study being done by Dr. Warman at Boston Children's on the cause of CCMS

http://mi-rare-cles.blogspot.com/2012/01/cerebrocostomandibular-syndrome.html
Guest blog post I did on CCMS with some helpful links.

I also have several PDF files of medical case studies on other CCMS patients, but an unable to post them here.  If you would like them, just email me and I will send them to you!



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