Our Community

Welcome to our community! This is a page where you can find true connection in reading about other’s experiences with Pectus Carinatum or even share your own! Everyone has a story to tell, and contributing can bring a level of community and comfort you may not expect. All stories may be made anonymous by simply putting ‘anonymous’ as the name.


Denver, CO

STORY: I was 11 years old when I was diagnosed with Pectus Carinatum. One of my biggest struggles with this journey was wearing the brace in public, particularly to school. I felt insecure and awkward wearing a metal brace around my chest, so I only wore it at home and at night. This worked out, but it definitely extended my treatment time and I had to wear the brace for 3 years until I got a final corrective surgery the end of my 8th grade year. 

ADVICE: My piece of advice would be to adjust the treatment to what works for you. It’s ok if you aren’t able to wear the brace for 23 hours a day. As long as you find a routine you are comfortable and consistent with, results will come eventually. 


STORY: I was 12 years old when I was diagnosed with Pectus Carinatum, and I wore a brace until I was 16. After I stopped wearing the brace, I noticed that my chest moved a little bit back out. I don’t know anyone else who has had this experience, but I am looking to relate with someone who has had a similar experience. 

If anyone has had an experience similar to Ashley and would like to connect, please reach out to [email protected] and I will put you in contact with her!


Denver, CO

STORY: I just began my journey with Pectus Carinatum; I was diagnosed at 15 and I am about a month into wearing a brace. One of the most important things I have learned so far is how to sleep with the brace on. I’ve decided not to wear it to school, so I really have to take advantage of my time at home wearing it. 

ADVICE: To be comfortable sleeping with the brace, I’ve set up a corner of pillows to lay on to prevent the brace from coming off or pushing into my side. Really, you just have to adjust to not being able to lay flat, and pillows are definitely the best way to do that. 


Grayson, KY

STORY: I was diagnosed back in about 2017. It started with 2 Pneumothoraxs, which lead to the diagnosis of Pectus Carinatum and Connective Tissue Disease. I had surgery back in 2019 to cut down the cartilage, take out a few ribs, and put my sternum back in place. They said I may need another surgery in the future, but its been good as of right now. I still feel the pain of my sternum popping out of place sometimes.

ADVICE: Be firm and trust your body. A lot of doctors will dismiss you, I’ve been told it was all in my head. Stay true to what your body is telling you and go with what you think is best FOR YOU!

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