Cerebrocostomandibular Syndrome
also listed as Smith-Theiler-Schachenmann Syndrome;CCM Syndrome; CCMS;Rib Gap Defects with Micrognathia
7 people found, showing 1 to 7
To save room on the page we use the term disabled to indicate those with disabilities, special need or a medical condition.
Canada
( Americas
)
Affected Person:
Oct 1991
Family type:
Siblings:
1
Disabled siblings:
0
Username: rayshell 
Relationship:
Mother
Other conditions:
None
Last updated: 12 Sep 2008
Brief summary: My son was born with ccms almost 17years ago. I guess that makes him the oldest member of this group. While he certainly struggled with resp. issues in the first months of his life we were able to support him with a nasal-pharangel? tube. He used this f
Israel
( Middle East
)
Affected Person:
Jan 2002
Family type:
Siblings:
2
Disabled siblings:
0
Username: ccmsliel
Relationship:
Mother
Other conditions:
None
Last updated: 13 Feb 2007
Brief summary: my son was born with ccms syndrom and he is the only one with this syndrom in my country it is very rare syndrom and i realy want to speak and share information with anyone.
Monmouthshire
/ Sir Fynwy
( Wales
/ Cymru
)
Affected Person:
Jul 1995
Family type:
Siblings:
2
Disabled siblings:
0
Username: emmylou
Relationship:
Mother
Last updated: 06 Jun 2009
Brief summary: At 13 yrs my son has just been diagnosed with CCM. He has had a tracheostomy,gastrostomy,LTR,PDA,and now lives with 50% lung capacity. There is far more to his story!!
Norfolk
( East of England Region
)
Affected Person:
Mar 1990
Family type:
Siblings:
1
Disabled siblings:
0
Username: LYJS22
Relationship:
Mother
Last updated: 11 Jan 2008
Brief summary: Our eldest daughter is approaching 18, she was born with cerebro costo mandibular syndrome. She has very severe micrognathia with less impact on her chest cavity.
United States of America
( Americas
)
Affected Person:
Jan 2008
Family type:
Siblings:
1
Disabled siblings:
0
Username: bekanze
Relationship:
Father
Last updated: 23 Jan 2008
Brief summary: My son was born with Cerebro-costo-mandibular syndrome of which Pierre Robin sequence is a part. He is 2 weeks old today. He is on a ventilator now and will probably need a trach. soon but there is so little info. regarding CCMS that i would really love
Affected Person:
Oct 1999
Family type:
Siblings:
2
Disabled siblings:
0
Username: ladylysa
Relationship:
Mother
Other conditions:
None
Last updated: 04 Sep 2007
Brief summary: I am 38 and My son is 8 now and he was diagnosed with PRS and CCMS at birth . My MIRACLE baby boy..
Worcestershire
( West Midlands
)
Affected Person:
Dec 1999
Family type:
Siblings:
1
Disabled siblings:
1
Username: bee1979
Relationship:
Mother
Last updated: 25 Feb 2010
Brief summary: I'm 31 yrs old I have CCM with PRS i have a 10 yr old lad and an 8 week old girl both of whom have CCM and PRS both my children are my mirical babies but then i'm my mom
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