Cleidocranial Dysplasia / Rubber Man / Marie-Sainton disease / Mutational Dysostosis | |
Cleidocranial dysplasia - FAQs |
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If the dentist diagnoses the condition, then he will refer to an orthopedic doctor, an orthdontic surgeon or a cosmetic surgeon depending on the priority. Is there any way to prevent Cleidocranial Dysplasia? Since the disease is transmitted genetically Cleidocranial Dysplasia cannot be prevented. Is Cleidocranial Dysplasia fatal? No, there is no evidence to prove that the disease is a primary cause of death. People with CCD can be expected to lead a normal, productive life with symptomatic management. Will my children inherit the condition if I have CCD? This is usually an inherited condition. There is a 50% chance that a child will have it. Two-thirds causes of the condition are genetic. Will my children get the condition if I do not have CCD? This is a rare condition and it is unlikely for it to happen in your child. However if it does happen it is due to the mutation of a gene and is called a spontaneous genetic mutation. However the chances of having another child with it are very small. |
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Posted by:
asajael(Guest)
Posted on: 12/06/2008 I have CCD. This biggest issue for me is the lack of structure. Therefore my arms are weak and hurt all the time. My back will hurt unbelievable if I stand in one place fore more than 5 minutes. I wish the educated doctors would get educated about this. I am so frustated with the lack of information and what I do find is very under ratedly correct. The biggest problem is not my mouth. This about this: if you were to build a house out of 1"x1"s and take a chuck or two out of it here and there... how long do you think it would last??? Do you really think with the shoulders not being formed correctly that it would not have an effect. Did you have to think about that first? Is there anyone out there who has some common sense on the matter???
Posted by:
guest
Posted on: 08/28/2008 I have CCD and the information on this site is incorrect. To state that one has to have dentures in today's medical advancements is so sad. I am moderator of a yahoo Cleidocranial Dysplasia site and the truth is this is no longer a fact. Myself and my children, plus many others have been successfully treated and have their own their own gorgeous smiles. Making such a broad statement makes people who find out their child has CCD and searching for answer and have no idea what to expect with CCD feel like there is no hope and there is.
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right now i can't find any body with theis kind of information please tell me what i am looking forward to when he gets older