Story about Carney Complex .

Carney Complex 17q24.2 - 17q24.3 deletion

Jan 4, 2017


I am writing in behalf of my daughter, 9 years at this time, who was diagnosed with Carney Complex.  At this age she has probable adrenal tumors because of her high cortisol.  She also has two small myxomas on her face.  She has lentignes on the whites of her eyes, lips, a few on her face, an on the privates but none are very noticable at this time.  She has a gene deletion of 17q24.2 - 17q24.3 which is how we found out about the Carney Complex a couple of years ago.  She is quick to agression and possibly due to the adrenal tumors or mental illness.  She has a half brother and birth mom who also have Carney Complex.  Birth mother is severely mentally ill and has intellectual disabilities as well, she had a heart myxoma but we don't have a lot of other medical information.  Birth half brother has had many myxomas near his skin and has testicle calcifications, intellectual disabilities, and mental illness.  Our daughter does not have intellectual disabilities and seems to be the only one with the exact deletion at the time that does not.  She is on or above grade level for all academics. 

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2 comments
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So sorry to hear about your very young daughter x Karen. I myself have carney complex. I'm 40 years old and I have suffered it the age of 16, in my breasts.

Commented 4 years ago Karen 1010
0

Thank you for sharing your daughters story with us. I can see that some of the symptoms you talk about are associated with Carney Complex the adrenal issues, lentigines, testicular calcification and myxomas. I am presuming the other symptoms you talk about, the mental illness and learning difficulties are associated with her and her families other gene deletions.

Commented 4 years ago Angela 2510

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