Patient Comments: Poland Syndrome - Describe Your Experience

Please describe your experience with Poland syndrome.

Comment from: 35-44 Female (Patient) Published: April 12

Having this syndrome does put a lot more pressure on you. Everyone thinks that you are disabled, including your mind. But for you, as the person living with this syndrome, it must be a mind change that this syndrome will not affect your way of living. It is very frustrating to walk into a clothing store and not be able to buy any clothes that you want. The surgeries take a lot out of you. But if you take charge and say that it will not get you down, then your life will be much simpler. There are some things that you cannot do, but there are just as many things that you can. It all depends on you.

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Comment from: Female Published: August 15

I am 37 years old and grew up with one breast. It was difficult growing up and trying to hide it. I had my first surgery at 15 and another at 25. As strange as it sounds, just now I am learning about the syndrome. I guess back then I just wanted to be normal. I wish I knew more back then and that I was not the only one.

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Comment from: a.miracleofmine, 0-2 Female (Caregiver) Published: June 17

I have a very beautiful 2 year old daughter that was born with poland syndrome. and hers is very rare, because, not only is she missing the musscle on her right side, she is also missing ribs 2-6. She sees a thurasic surgeon that is just the greatest. He and his team have been wonderful with us and my daughter, but she for sure has a long road ahead of her with many more surgeries. Also she is very prone to illnesses , and respitory issues. she has been in and out of the hospital due to these illnesses. pnomonia, rsv, flu, and her having asthma, and allergies make it even more rough for her. She is getting ready to see a pediatric pulmonologist for some intense respiratory therapy. I wanted to share the story about my daughters poland syndrome, because there are no known cases of a child being born with poland syndrome that have the missing ribs. i can tell you that it has been a terrible rough 2 years for her and her family.

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Comment from: Shamrock44, 45-54 Male (Patient) Published: May 03

I am currently in a care facility. I just had surgery for my left pec. I will be going home tomorrow after I see my doctor. The implant looks good so far. I just wish I could have done the surgery when I was younger, when I really needed to look good. Unfortunately, there was nothing that could be done back then – plus I had no money.

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Published: March 27

Having Poland syndrome kind of sucks, especially since I'm a teenage girl.

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Comment from: syndrome, 19-24 Male (Patient) Published: March 22

I've thought about killing myself countless times. Because of it, I can't seem to stop thinking about it--every single day it's on my mind.

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Poland Syndrome - Treatment and Surgery Question: Please share your experience with surgery to treat your Poland syndrome.

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