Patient Comments: Poland Syndrome - Describe Your Experience

Please describe your experience with Poland syndrome.

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: B5423, 19-24 Female (Patient) Published: February 11

I believe I have this Poland syndrome. My pectoral muscles are underdeveloped, my left breast was absent, and my armpit hair for the left side grew crooked. I have no webbed hands or anything like that. I started wearing prosthetics growing up, in absence of my breast. At age 18, I underwent plastic surgery to have a breast implant. First surgery, they implanted a balloon to stretch the skin and filled it with saline every 2 weeks. Then, I actually got the implant. I"m currently under FDA study for this new type of implant. It"s been 5 years, and no problems. I feel like a normal woman.

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Comment from: jim, 45-54 Male (Patient) Published: December 16

I knew from age 5 years old, that I looked different from guys my age. This bothered me because all the boys I went to school with had normal chests. I was missing my whole right pectoral muscle, the doctor had never seen this before. He was surprised, he told my parents that this occurs to 1 in every 700,000, people born. That was in 1974. At least I now have a name for it. I was informed that my body would twist and draw my upper body to the right similar to scoliosis as I get older, from the lack of support to the upper ribcage.

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Comment from: ara smith, 45-54 Female (Patient) Published: May 21

I am a 50 year old mom of 2. It has been quite a ride with Poland syndrome (PS). I had my first surgery at 16 and again at 42. I have the PS that has the tendon webbed through my breast wall and it runs up into my armpit to down to my elbow and out my ring finger. It strained a few days ago and now it is a steady burn. I have limited range of motion in my right arm and it basically stays against my ribs for protection.

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Comment from: spock, 45-54 Male (Patient) Published: October 15

I have Poland syndrome and Mobius syndrome. Poland syndrome can be associated with Mobius as has happened in my case. I have a small right arm and the hand is club shaped. My shoulders are small and the right shoulder muscle is missing. I also have problems with lower back pain due to Poland's. I also have high blood pressure though I am not sure if I can blame Poland's for this.

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Comment from: 25-34 Female (Patient) Published: December 02

My sister was born with Poland syndrome. Her anomalies were diagnosed when she was 15 years old. She also has aorta stenosis and spina bifida, and one month ago we were told that she only has one kidney. I hope there will be no more anomalies.

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Comment from: Linda, 65-74 Female (Patient) Published: April 19

I have Poland Syndrome. I'm 66 years old. When I was born in a hospital in Los Angeles, they didn't even notice that two fingers on my right hand were webbed. It wasn't until several days after leaving the hospital that my grandmother noticed it. The doctor told my parents that when there is one birth defect there are usually more. At that time, he noticed my pectoral muscles weren't there. He said my right breast would probably never develop and he was right. It was very difficult as I started maturing. It wasn't until I was in my early 40s and had my first chest X-ray that I found out my rib cage and sternum were deformed. I still didn't have a name for what I had until I was almost 50 and had a mammogram. The young assistant had been studying Poland syndrome and actually printed me off information on it. At age 53, I was diagnosed with breast cancer – in the right underdeveloped breast. My plastic surgeon was quite fascinated that I had all the symptoms that seem to go along with Poland Syndrome: webbed fingers, shorter arm, smaller hand, rib cage and sternum deformed. It was only a few years ago after experiencing years of back pain that I found out my right leg is also shorter. Now I wear a lift in my shoe. I feel very blessed to be alive after cancer, chemo, radiation, and even being bald. Yesterday I went to buy a new breast prosthesis, still a humiliating experience. I've worn one since I was 12 years old and my mother would make them for me since they didn't sell them back then. But life is good. I have a wonderful husband, six beautiful children, and 26 amazing grandchildren. I check each of the babies as soon as they're born. All are perfect.

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