Patient Comments: Cleidocranial Dysplasia - Describe Your Experience

Question:

Please describe your experience with cleidocranial dysplasia. Submit Your Comment

Comment from: klfrankl, 19-24 Female (Patient) Published: September 16

I was born with this cleidocranial dysplasia obviously. I have 2 kids and they both have it too. I had 3 sets of teeth. I have no collar bones and my soft spot didn't close. I had to have surgery when I was 10. If my daughter’s soft spot doesn't close by next year she will have to have the surgery too. She is now 4. I still don't have all of my permanent teeth. But it’s all so expensive so I had a delay in getting this all done. But I am managing.

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