Patient Comments: Poland Syndrome - Describe Your Experience

Please describe your experience with Poland syndrome.

Comment from: Marc, 45-54 Male (Patient) Published: August 17

I have Poland's syndrome. I first became aware of it when I was ten or so and it has caused a lot of issues. I had a botched operation at 19, and had another one a year ago. My right breast muscle was missing, I have a slightly smaller muscle on the top of my arm and I think there are other things wrong, like I may have a shorter right leg. Anyway, it was very bad for my confidence. Operations are better these days and plastic surgeons are more aware. I had a simple silicone implant put in, after an initial operation to put a saline bag in to stretch the skin. I would say I look maybe 70 percent better, and I feel much more confident, though not always.

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Comment from: Grandma, 75 or over Female (Patient) Published: April 21

I was diagnosed at birth with absence of left breast and nipple. As I grew it was obvious that I had no large muscle in my left arm, my left arm is shorter than my right. I look as if I have had a radical mastectomy. I did not receive the diagnosis of Poland syndrome till I was aged 70. I contemplated surgery when I was 33 but was advised against it as it required long and prolonged recovery. However these days they know more about it.

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Comment from: LucyH, 0-2 Female (Caregiver) Published: March 05

My daughter is 20 months old. When she was born she was diagnosed with scoliosis, webbed fingers on one hand, missing finger on one hand, small to no apparent shoulder blade on opposite side, and clubbed ulna; her radius and ulna are fused together. On Monday she had to have a cast put on her hand she had broken, with the clubbed ulna, and I had asked the doctor if he thought that her body brace was smashing in her ribs because it seems to be pushed in on one side. He took a look even though he is only a hand orthopedist and had told me that she is missing her pectoral muscle. When I looked Poland syndrome up all the symptoms are exactly as my daughter's defects. Not one doctor has ever put any of these together and noticed that this could be a possibility.

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Comment from: DAK, 55-64 Female (Patient) Published: October 15

I was born with Poland syndrome. I had webbed fingers on my left hand, and the left side of my body didn't fully develop. I missed a shoulder muscle and my left breast did not develop as much as my right one did. This obviously caused me confidence issues, so in my early twenties I had breast implants. This was great initially. Since then I have been through the trauma of having implants that split and leaked silicone into my body.

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Comment from: zoe, 25-34 Female (Patient) Published: May 30

I was diagnosed with Poland syndrome at the age of 14 because I only had one breast. I went to my doctor who wrote to a consultant, they wanted to wait for me to turn 18 before they would operate with an implant. Until I turned 16 I wore special implants for my bra. I got bullied. It's been 18 years since I had my operation and I am now in a lot of pain. My implant is M shaped and it makes a popping sound. I am trying to save the money for private implants as the government will only do one on the NHS.

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Comment from: 55-64 Female (Patient) Published: July 31

My son is 13 years old with Poland syndrome (PS). When he was born in 2001 nobody knew why his fingers were webbed, not even in the hospital. I was so sad I felt so guilty myself that I got depression for almost 1 year. After 4 years a doctor told that what he has is PS. I still do not understand why me. My son does not talk about it, but I know he feels so sad and lonely. I do not know what to say, what to do. He is a teenager now, soon he is going to high school, and I just hope that kids there do not treat him different.

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Comment from: TJ, 25-34 Male (Patient) Published: January 07

I think I have this Poland syndrome but my right hand and arm are normal. My right chest is basically smaller than my left and it is not from working out one side more. I have known about it since grade school and I am 30 plus now. I am a man so I never had surgery. It does suck because you are always self-conscious. It could be worse though, at least it is not deadly.

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