Patient Comments: Poland Syndrome - Describe Your Experience

Please describe your experience with Poland syndrome.

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: 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: 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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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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