Patient Comments: Poland Syndrome - Describe Your Experience

Question:

Please describe your experience with Poland syndrome. Submit Your Comment

Comment from: Kristy, 19-24 Female (Patient) Published: January 12

I was absolutely normal till the age of 13. I was skinny so the symptoms of Poland syndrome were not visible. All of a sudden, I started gaining weight and then it all started. But I ignored it for all the years till the age of 21, when it started hampering my mental health. I couldn't even wear clothes properly. I tried all the videos on YouTube, home remedies and massages, but nothing helped, until I had to tell it to my family. Now I have a surgery pending but it hasn't happened yet.

Comment from: Miss Pat, 55-64 Female (Patient) Published: January 13

I was born with Poland syndrome 62 years ago. I was diagnosed at about 5 years of age by a doctor. No issues till puberty and then became very self-conscious. Reconstructed with implant at 15. Reconstructed again with implant and latissimus dorsi muscle flap. While the result was aesthetically good, I lost lots of strength and have had lots of pain over the years. I would recommend lots of counseling for patients early.

Comment from: Michael, 65-74 Male (Patient) Published: September 24

I never knew this condition was called Poland syndrome until I recently found this article on a web search. I am missing the lower half of the pectorals on my right side. As a male, especially in adolescence, I've always been self-conscious and embarrassed while shirtless under certain circumstances. This condition has never hampered or inhibited me from any kind of physical activity to this day, and I am now 66 years old and still in good shape. I am inspired by others who shared their feelings.

Comment from: Miss , 35-44 Female (Patient) Published: December 17

I am in my early 40s. I first noticed there was something wrong around 11 years of age. By 13 I was a size D on one side and an A on the other. Nobody could understand how traumatizing this was and still is for me. I’ve had two botched surgeries, and insurance wouldn’t cover much which is so wrong. This has led to much depression which causes lots of health problems. I’ve always wondered what my life would’ve been like if I didn’t have Poland syndrome.

Comment from: Lui Ca, 45-54 Female (Patient) Published: October 09

Ten years ago I suffered a malpractice in a breast cancer treatment (T2AN0M0 carcinoma in situ) and, instead of a so called Madden radical mastectomy, I discovered that I do not have one of my pectoralis major and two ribs (second and third) which were surgically cut without being fixed in any way causing Poland syndrome. I have great pains, although I survived with no cancer. The fingers are also a pain problem. I swim and I do use Lympha press. The big problem is sleeping.

Comment from: Natcho Mama, 45-54 Male (Patient) Published: October 28

I am a 54 year old male and have Poland syndrome. I don't know what to do anymore. A lawyer working on SSI (Supplemental Security Income) paperwork and workman's compensation has stiffed me, no prior medical record. I have no income at the moment. When you are on pain management, how do you complain, and how many times! The doctors want to send me to physical therapy (PT) again. I was supposed to be on light duty, not picking up heavy. My mid spine twists at night and in PT, that’s why I do not want to go.

Comment from: Oldlauren, 55-64 Female (Patient) Published: August 22

My family didn’t accept that there was anything wrong with me. My right pointer finger, and middle finger were fused almost to the top. My parents insisted on paint lessons, give me a break! My right hand was very deformed from Poland syndrome, and I was missing digits. I was also missing my major pectoral muscle. It wasn’t easy. I had my web operated after having two babies in one year. The recovery was extremely difficult. I still have a hard time with my deformity.

Comment from: Nidhal , 19-24 Male (Patient) Published: August 15

For a start, I diagnosed my case of Poland syndrome on the internet, because no doctor could! That kind of makes me upset, because I knew that they wouldn't be able to treat me. I tried to cope with it and accept it but it just didn't work. I just kept watching my friends enjoying their bodies while I was shy and intimidated to be shirtless. This disease is truly limiting (mentally and emotionally). And even after I knew that there were promising treatments I knew I wouldn't be able to afford them.

Comment from: Jbird, 55-64 Female (Patient) Published: July 06

I am 58 years old and I never knew what was wrong with me. I come from a strict English Catholic background. It was never mentioned to me, ever, and growing up with Poland syndrome was awful. I am missing right pectorals, right breast is concave, and my right ribs are very different. Health insurance would never pay for an implant and/or a muscle replacement, because it wasn't caused by cancer. Never had the money to fix it. I don't have a spare USD 10K. People who were diagnosed very young, thank your lucky stars your parents knew.

SLIDESHOW

Fetal Development Stages: Embryo to Fetus, in Weeks See Slideshow
Comment from: Kj, 55-64 Female (Patient) Published: June 18

I came to this site because I have what I can only describe as acquired Poland syndrome (PS). I am a breast cancer survivor trying to adjust and survive after botched reconstruction implant surgeries that have left me with nerve damage, near complete loss of major pectoral muscles and muscle atrophy that is beginning to extend to my left arm, shoulder and back. I am a bit worried, but you all have encouraged me with your positive outlooks and active lives. I used to consider myself an athlete and looked forward to continuing living an active life. Unfortunately my PS chose to go rough and I am very limited now with what I can do until my physiotherapist determines what functions my body can compensate for and what actions will cause damage to what I have left.

Comment from: Poland1234, 25-34 Male (Patient) Published: May 01

Reading all of these comments is truly inspiring. I was diagnosed at birth with Poland syndrome and the doctor said I would have full range of my arm (which I do). I have a smaller nipple and my armpit hair grows weird on the right side. Kids are cruel. However, I have never let that stop me. I am quite athletic and good at most sports. However at 31 now I am interested to see if this condition is the precursor for some serious health issues. I never got an implant but I am concerned for my health. Thank you for sharing.

Comment from: LD, 65-74 Female (Patient) Published: January 03

I am 65 but did know what I had all my life. I have short fingers on right hand that were webbed when born. I've had several surgeries to correct and used my hand all my life. I also had my right breast much smaller and had that corrected when I was 29. I have redone the breast surgery two more times and it looks great. I have always used my hand. I type and write with my right hand. It's scary to have a child born with Poland syndrome but it's not a death sentence! You do what you have to do and that's what you tell kids.

Comment from: Senior Male, 65-74 Male (Patient) Published: June 29

I was born without my left pectoral major muscle. The doctor noticed my condition right away. He told my parents not to be concerned and not to treat me as handicapped. I was self-conscious about my Poland syndrome in my teen years, but I was able to do everything that my peers could do. It was rarely mentioned in my family when I was growing up. I was given a 4F classification for military service and could never serve. I was worried that I may pass this condition to my children and grandchildren, but I'm happy to report that none of my family has it. At my age, I just move on with little impact on my life.

Comment from: 40yearoldPS, 35-44 Female (Patient) Published: June 28

When I was born with Poland syndrome 40 years ago, a very wise doctor told my parents that my 'disability' would only be as big as they made it. I'm glad they listened. I do not have my right hand, only 2 tiny little fingers, and no right pectoral muscle. But, I played, baseball, softball, volleyball, basketball and tennis. I've rock climbed, ridden mountain bikes, zip lined, etc. I can't do monkey bars, but the Poland has never stopped me from doing what I want to do. I also am married with 2 very active boys and I am out on the field playing catch or soccer or whatever is needed. She will do whatever she wants to do!

Comment from: Alainasmom, 0-2 Female (Caregiver) Published: June 22

My daughter is almost 2 and she was diagnosed with Poland Syndrome last year. I am so worried that once she starts puberty, her left breast will not develop and she will need an implant. Thank goodness nothing else is abnormal (such as arms or hands or fingers). As a female, we grow up with a complex and this makes me sad. The doctor told us that she will not be able to play in any sports, basketball, baseball, or anything where she has to lift her arm high. She is such an active baby, she loves to dance. The doctor wants to monitor her every year to monitor her developments.

Comment from: Leigh, 45-54 Female (Patient) Published: June 22

I am 50 years old and never knew what caused the deformity of my right breast or lack thereof. It wasn't until my mammogram this year that the technician who was doing the mammogram suggested that I look into Poland Syndrome. No doctor has ever been able to tell me what I had. I have been embarrassed by this my whole life. I have always wanted to have surgery to correct, but insurance will not pay for it and I cannot afford to pay out of pocket. More needs to be brought to light about this syndrome and Insurance companies need to be a little more understanding of the psychological effects this has on you. I would love to feel whole and normal even if it has taken 50 years to get there.

Comment from: Chakayalf, 13-18 Male (Caregiver) Published: May 10

I noticed my son had a small nipple that looked tattooed on his left side, but the doctor dismissed my worries. When he was about 5 or so, I googled his symptoms: absent pectoral muscle, smaller fingers on left side, left clavicle at a different angle, etc. Poland syndrome covered all the symptoms. My son is 13 now and midway through puberty. The differences between one side of his body and the other are becoming more marked as he grows and he is now beginning to be self-conscious about it. I am not sure what to do next. Do we see the doctor and get a confirmation, so it is on his records if he wants something done at a later date (i.e. pectoral implant), or not. I don’t want him to feel more insecure than he does now. Those teenage years are a mine field as it is.

Comment from: LuckyMom5, 65-74 Female (Patient) Published: January 30

I just learned the name of my deformity is Poland syndrome; missing development of right side pectoral muscle and breast. I had implants at age 34 and was pleased with results. I have been told that my maternal grandmother had this condition. I have right kidney that 'floats' and is palpable. I have had some minor issues over the years but have had 5 normal births. I just learned that I have scleroderma per ANA blood test. So far I only have some digestive issues. Thanks for the information on Poland syndrome as I was also curious about my condition and no medical personnel ever informed me as to the name.

Comment from: Fig65, 45-54 Female (Patient) Published: December 13

I was just diagnosed with Poland syndrome at age 51. My left side of my body is smaller than my right. I hardly have a left breast and my left hand is small. I was born with this and have never told what happened or a name for it.

Comment from: Appy, 35-44 Male (Patient) Published: November 18

I have Poland syndrome, my right side chest muscle is missing. I came to know when I went for my pilot medical exam, they declared me unfit to fly but later couple of tests were done and they found I can do all works as a normal person. Now I am 35, and I am an airline pilot.

Comment from: Lessone, 55-64 Female (Patient) Published: September 06

I was born with Poland syndrome and didn't find out until I was 53, and I'm now 57. A lot of the doctors I spoke with never heard of it. I haven't had any surgery to correct it. I would like to just to see how it feels to be a whole woman because it is hard dating with this. I don't have web feet or hands, I look normal. Just my right breast didn't develop. I haven't found a bra that would have a form filled cup. I have tried bras for cancer patients but no luck. So from this point I don't know what to do.

Comment from: (Patient) Published: April 06

I have Poland syndrome and first became aware of it at around five years of age. I've always been grateful to my family for not making it an issue in my younger years. I am missing the right pectoralis major which caused me to use my left arm for any functions that required added strength, such as in bowling or throwing a ball. While in high school I participated in varsity wrestling and football. I even had a 24 year career in the Navy, retiring as a Chief Petty Officer. Obviously, the absence of the pectoralis muscle didn't go unnoticed at the many physicals I went through. I will admit to being very self- conscious of my appearance but at this stage in life I have no intention of undergoing any cosmetic enhancements or corrections.

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.

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.

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.

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.

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.

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.

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.

Comment from: Sandra cobb , 45-54 (Patient) Published: June 12

I was born with Poland syndrome. No pectoral muscle, claw hand, weakness throughout left hand side, and very painful piriformis on left. Unsightly hand; to me it is. I had breast reconstruction to put pectoral muscle in, and implants. Didn't work. I developed piriformis syndrome, arthritis and osteoarthritis on the same side. I feel suicidal. Now my boys are at university and I am alone and in pain. To a disease that is not my fault. Never smoked, no drugs, etc. But I seem to be last in queue for pain relief or any kind of pain management. Divorced and on my own at 51, struggling to a point of suicidal feelings. Medications have had my driving license revoked. Great, now am house bound, just what I need.

Comment from: the king, 55-64 Male (Patient) Published: June 02

I am 58 and now as I'm getting old my left arm is getting very weak and I can’t hold anything for long. I have Poland syndrome on the left side of my chest. When I hold something for more than a few minutes it becomes painful.

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.

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.

Comment from: mother fro sri lanka, 0-2 Female (Caregiver) Published: November 25

My 7 months baby girl is suffering from Poland syndrome. She has missing, her right side of the chest muscle. I just want to know about any treatment for enhancing the chest muscle back without surgery.

Comment from: Paitient, (Patient) Published: October 07

I believe my self-confidence came from my parents who never treated me as handicapped. I was always told I could do it, if I disagreed they said, 'you can do it, you just don't want to do it' and as usual they were right. They made me try once and if I really didn't like it I could be excused from it. Despite the Poland syndrome I took care of my 5 brothers and sisters from infancy changing diapers, doing all housework and cooking meals and laundry as we had 2 adults and 7 children.

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.

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.

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.

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.

Comment from: mr g, 45-54 Male (Patient) Published: December 22

I am 50 and had Poland syndrome since birth in hand and chest. I am in horrendous pain in my arm, hand and back. I never asked anyone for help, but I got DLA (disability living allowance) payment of 20 pound as I had troubles cooking a meal. I had to transfer to personal independence payment, no chance I thought, but I now get 83 pound a week to help with my care and 25 a week to help with my mobility, and a blue badge for the car, after all those years of suffering with no help.

Comment from: J E. MAY, 45-54 Male (Patient) Published: December 01

I have Poland’s syndrome, more support needs to be given to persons affected by Poland’s syndrome. Sadly there has been an issue with mine, to my belief I have received poor medical care. There is a need for appropriate medications, I have received harmful peer support and detrimental social support.

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.

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.

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.

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.

Published: March 27

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

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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