By Anita on Sunday, July 16, 2000 - 05:50 pm:

Hello, If you come to this forum and have Cleidocranial Dysplasia or dysotosis. (Please check old board for more postings) And would like to talk to someone who has it, write to me. AnitaK1982@hotmail.com

Cleidocranial Dyplasia, is where a person is born without a collar bone and extra teeth that must be removed through surgery before one can ever hope to have a pretty smile. Sometimes there are other issues pertaining to this for example (my knees dislocate) I do not know if this is because of CCD or not. Write me if you would like to talk. Anita

By sara on Tuesday, July 18, 2000 - 05:34 pm:

Hello All-
My name is Sara and i am a 19 year old girl from the USA with ccd. Growing up i did not know much about this disorder. I recently became very educated thanks to the internet and my wonderful orthodontist.

I came in here and read some of your posts and i just wanted to let all of you worried parents know, it is going to be ok. Your kids will make it through this, as CCD will not make them any different from the other kids.

Growing up with this condition, i have always had a really small frame, currently only about 5'1 and 98lbs and i do not have clavicles. The first person in my family to get CCD was my father, we do not know where he got it from.. (However, studies show that 33% of people with ccd incurred it sporadically, the others were born to parents, therefore inheriting the gene for this disorder. So If you are a parent who does not have CCD, with a child who does, remember, 33% of cases are sporadic.

Also, My 17 year old sister has this condition. Along with being clavicle-less, we had supernumerary teeth and had to have them removed and braces put on the permanent ones under the gums to bring them into place. It was quite a procedure and i wore braces for five years, but now my smile is well worth the wait:)

I consider myself completely normal in every way, even compared to all of my friends. I am not treated differently EVER. I am of a small frame however, my father with CCD is 5'8 and my mother (who doesn't have CCD) is 5'1, my sister with CCD is 5'2. So i don't think i had the tall gene in me to begin with:)

As for all of you worried parents wondering if your child is going to grow up ok, YES THEY ARE! Do not treat them like they are different or they will dwell on the condition and make themselves sick. When i was younger and i heard i had "something wrong" with me i used to make myself all upset wondering how it got inside of me and when it was going away. This is why you must treat your child like they are completely normal, talk to them in a calm way about the surgeries they may need to have to correct the teeth and most importantly, be there for them.

This condition has not impared me in any sense, i was a college gymnast, active in dance and cheerleading, and i always got good marks in school while being an outgoing and sociable child. If any of you have questions as to information about the teeth surgeries, and would like to contact my dentist (who knows a lot about this condition), or you wish to email me about anything at all, even just to be friends and chat, I'm here:)
Sincerely,
Sara

By Lisa on Thursday, September 07, 2000 - 11:46 am:

I have a 8 year old son that has CCD. I am trying to find out any new information on this birth defect. He is one of the 33% that it just happened. Jacob is very bright but has been diagnosed with Sensory Integration disorder and mild ADHD. I don't know if some of that is because of CCD or just something added that makes him more special. He may have to have extra dental work because his baby teeth came out but the adult teeth have not yet. Lisa e-mail-- angelfacebaby_98@yahoo.com