Most of my friends already know of my birth defect. Even some of the guys I shared my college dorm with called me Nemo because of my "lucky fin." I have had lots of laughs around the topic of my dead sexy deformed body, but I realized that I have never written about it on my blog. Well, here you go: I hope you are encouraged and learn something new.There is very little known about Poland Syndrome. According to the National Human Genome Research Institute, it is a rare birth defect named after Alfred Poland. It is estimated to affect between 1-in-10,000 and 1-in-100,000 births. The cause is unknown, but "most evidence supports the idea that something happens during the 6th week of fetal development," possibly an interruption of the embryonic blood supply, stinting growth in a certain area.
This congenital deformity is characterized by many features, but here I will list the ones that specifically apply to me:- Absent pectoral muscle
- Brachydactyly (short fingers)
- Humerus, radius, ulna bones abnormal
- Upper limb asymmetry
I am very physically athletic and use my arm as if it is normal. I play sports, do push-ups, pull-ups, handstands, and even back handsprings. I have found that other muscles compensate for my missing pectoral, allowing me to have enough strength to perform basic activities. However, there is a significant lack of strength in my right arm muscles. I find myself using my left arm a lot more when maxing out on push-ups or pull-ups.One of the most fascinating things is that I am predominately right-handed. However, because of the crooked fingers and the slower responsiveness of my right hand, I switched over and learned to write with my left hand. I still kick with my right foot and often still carry bags with my right arm because it feels natural to me. But because my left arm is stronger, I usually carry heavy items on that side.
Very few people notice it when my shirt is on. I used to be nervous to take off my shirt in public. For example, when playing a fun game of ultimate frisbee, I would be bothered if someone declared, "Okay let's make two teams--shirts versus skins," and hope that I got on the shirts team. But that was years ago. Now I am comfortable taking off my shirt because adults don't tease the way that kids do. Most people are fascinated with it.I have come to appreciate my deformity. It's funny saying that because it doesn't really seem like a deformity to me. I am who I am. Everyone is different. Some people have big ears, some people are bald, some people are big, some are small, and some people are missing their pectoral muscle. Not a big deal to me.
What makes me sad is when people are ashamed of their Poland Syndrome. There is one guy I found online that hates his deformity so much that he had tattoos put over 98% of his body to cover it. In one article I read, he said that he feels more valuable and special because of the tattoos. He also said he got the tattoos in order to hate his body less. Such a sad story.
I believe that God made me this way for a reason. I am humbled every day when I look into the mirror and am reminded of what's really important: our life mission. One day our bodies will waste away and return to the dust of the fields. How do we want to be remembered? How will God remember our lives on the earth? These little physical issues in my life are nothing. They are worthless in the grand scheme of things. So, why take my body so seriously? Who cares what other people think of my deformed body? Who cares if I can't look like those ripped underwear models? God cares about my heart. What I want to do with my life is use it to worship and honor the Lord of all Creation ... no matter if it's perfect or if it's deformed..png) |
| Absent pectoral muscle is the most common deformity in PS |
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My Tattoo
You know what's funny... talking about your crooked fingers is actually one of my clearer memories from metzger. I remember thinking "huh, he has cool fingers." That was about the extent of it, nothing profound, except for smiling at the memories of us in grade school. Hope you are well! -Sarah Glathar
ReplyDeleteWell said. Thanks for sharing. It's apparent your treasure is in heaven. Good to hear.
ReplyDeleteP.S. You don't know me. I saw your comment on Matt H's site and decided to give your blog a look. I notice some other people from Ethnos commenting here... I hope you don't go there and I have just somehow missed meeting you. That'd be pretty embarrassing considering that there aren't that many people there.
nice article... i too have poland's syndrome, but am not as comfortable as you are with taking off my shirt. I was "forced" to for the first time this past summer.. had an internship, and we were playing ultimate frisbee, we had to go shirts and skins since no one knew each other. Wasn't bad at all. Your article gave me a new perspective on things. thanks!
ReplyDeletehi my name is dan and i have poland sndrome 2 i really could do with some 1 2 talk 2 me about it iv had an operation on my rigt tit and im still not happy with it
ReplyDeleteHI IT DANIEL I HAVE POLANDSNDROME BUT DONT HAV NOTHINK WRONG WITH MY HAND
ReplyDeleteEnjoyed reading your blog! I too have Poland's. I can't say that growing up was easy at all and have had a few difficut times, as I am a female, however as I have aged, married, and had children, one realizes what is truly important in life. Like you, I feel like Poland's was a gift of some kind. Maybe to help others who follow behind us!
ReplyDeleteAaron, thanks for putting up such good information and sharing. We've got 6 month old triplets, and one of our boys was diagnosed with Poland's syndrome today. For us, it was pretty awesome to read your blog and hear your perspective, especially with your faith. (We're big C.S. Lewis fans too). I'll be copy/pasting your post to save for my boy when he gets older, and thanks again.
ReplyDeletei as well have poland syndrome. it's good to here someone with such a positive outlook on it. i'm a female and had a very hard time coping with it growing up. i was called various names such as a gimp. it wasn't until i met my husband that i really started to overcome it. looking back i wish i hadn't taken it all so personally. my hand is a little deformed as well. it's funny ur friends call u nemo i used to get asked if i swam in circles cause my hand is actually a little webbed. i guess in the end it really has just helped me see what was really important in life. thank you for your insight.
ReplyDeleteI have the exact same symptoms as you. I am a 15 year old boy and i am actually really embarassed about it. None of my friends know about it. I guess i do a good job of hiding it. My right arm is smaller and i have broken it three times. Thats why I thought it was smaller.
ReplyDeleteThats very brave of you to post a blog about it. I would never do something like that. I understand where your coming from with the "God made us all different." But those differences have a great affect on life for me. It makes me feel so out of place. I see other peoples bodies and wish i had them. I wish I could be another person sometimes. I sometimes feel depressed about it but i just let it go most of the time. But its always in the back of my head. I can't stop thinking about it.
I will have girlfriends and will be terrified that they will dump me if they find out about it. And that they will tell their friends, and they will tell people, who will tell more people. It's a very tough thing for me to deal with but i can see you handle it much better than i do.
This is the first time I have ever even talked about it to anyone... I dont even talk to my parents about it. They know, but they have no idea how it effects me inside.
jow!
DeleteI'm a 16 years old girl and I... think I have poland syndrome.. nobody ever told me what I actually have. The thing is, that i have a little left hand so i guess i have it, right? :/ The only thing that the docter said was that my hand might have been stuck in the umbilical cord and so it did get to less blood or something, he didn't know for sure. Anyhow, i feel exacly the same way. And of course a tshirt won't hide it so normaly i just hide it behind a paper when I have to speak in class or i put my hands between my legs when i sit (i just have it on one hand but i think it would be weird if i did that just with one hand). I try to ignore it but just like it is whit you it's always in the back of my head. When we have to hold hands to make a cirkle I always try to stand next to a friend so i don't have to explain everything for the 10000000x time. I m not embarrest to have it, but the reactions hurt most of the time. They're like; OMGEEZ i'm so sorry! or they are like; ow i feel so sorry for you. :c . I know they're trying to be nice but it fucking hurts that they always have to remind me that I'm not like them. That i'm somehow not normal. But i always say that i'm fine and that it's ectually really handy because i don't have to open the mailbox, and put on the best fake-smile that i have. But extually does our mailbox have a quite big "inlet?" (i have no idea if i used the correct word) so i can put both my hands in it and half of my arms. So it really doesnt have any adventages. I noticed i can't play the guitar and also piano is difficult because i cant spread my fingers so far. (to little and stuff)And it sucks because my granddad and i both like to play music, its a special thing we have, nobody else of our family likes it. Buuuuuuut anyhow... it is possible to have a girlfriend! i had a boyfriend last summer and he actually never knew about my hand. But the asshole broke up with me anyhow. :/ And just like you i can't tell my parents. Not even my friends. I thing i would just be moaning, its not like they can do anything about it right? And lost of people have more problems then me so it would be kinda selfish i guess.
I know how u feel I was told the same thing. please email me strawkca@hotmail.com
DeleteI was born missing my right peck muscle and know exactly how you feel. I'll be 40 this month and still haven't been able to embrace the way I look. When I was 19 I had an implant put in to try and make my chest look normal. Didn't turn out the way I thought. I thought I would be able to take my shirt off and no one would notice. Its pretty obvious there is a foreign object in my body. Doesn't look normal that for sure. I've gone through life afraid of what others would think of me if they knew what I looked like without my shirt on. I wish I didn't care but I do. I hate the way I look and can't seem to get over it. I've been asking "why me" for so long. What did I do to deserve this. Why is life so cruel to some people. How did we get so unlucky? I don't know. All I know is I find myself alone a lot because I don't want to get close enough to anyone so they don't know about what I really look like which is really sad. I make up reasons why I can't go to the beach or the lake or anywhere I would be expected to take off my shirt. I hope you can figure out a way to embrace yourself and not go through your whole life alone like me. Good luck
DeleteI have poland syndrome too.. I am only missing my minor pectoral muscle on the right side. My hands are fine..
ReplyDeleteIts funny because everything u have said that about playing skins vs shirts is exactly ehat i go throuhg...
I have played soccer my whole life and to know someone else has this is amazing!! I started laughing becasue its a relief=]..
Congrats to u for being so strong!! it is very hard to overcome the fact of accepting.
I am actually getting surgery in two weeks to get it fixed. Let me know and ill post pics of me now and then after to see what everyone thinks.
Thanks
A very interesting read, thanks for sharing! Your outlook and openness are inspiring.
ReplyDeleteEveryday I think about it as a positive rather than a negative also. Of course you stumble upon thinking about surgery or maybe a tattoo could cover it up, but then you realize that you have something that others do not, so why worry when you can easily turn this minimal deficiency into a positive experience.
ReplyDeleteEnjoyed reading
p.s. my nickname is also nemo haha
Wow! You are awesome. I have a 2 year old son with this, and I hope that he one day feels just as you do. Thanks for your honest words & sharing your story.
ReplyDeleteGod is definitely using you in powerful ways.
I am a Pediatrician who is preparing a lecture for interns about breastfeeding and I will discuss Poland Syndrome as one of the causes of unilateral breast hypoplasia. Thanks for your presentation.
ReplyDeleteI have a 14 year old son with Poland Syndrome. We actually just got the name for it last week. While it doesn't affect his arm or hand, his chest is actually worse and it affects both sides. We are talking to a Dr about surgery. I am wondering if you or anyone reading this knows of someone who has had the surgery. If there is anyone who has had it at a young age, that would be great.
ReplyDeleteYou look absolutely amazing and I thank you very much for sharing your story!!
kmcdonell@charter.net
Enjoyed reading your blog! I too have Poland's. I can't say that growing up was easy at all and have had a few difficut times, as I am a female, however as I have aged, married, and had children, one realizes what is truly important in life. Like you, I feel like Poland's was a gift of some kind. Maybe to help others who follow behind us!
ReplyDeleteThanks for sharing with us. I also have PS. I am a female 47. I have the same thing with my right arm. Not being able to turn it. I am missing my right thumb. But the smaller part and all I have.
ReplyDeleteIt has also effected many other parts of my body. The main part that is getting my body down now at my age is the effect on my spine.
I have to say growing up was hard. But I never let it stop me. I always say the only thing I can't do is Hitch Hike. I also am a champion thumb wrestler in my family...
God is wonderful and yes we are special..
Im suprised that so many people have this. My family told me I was missing a rib when I was younger. I don't have any arm or hand deformities, but my pectorial muscle is gone. I find that I'm really self consious about this. Sometimes I'm afraid to wear certian shirts because I dont want anyone to notice. Sometimes I get people trying to read my t-shirts and I get insecure with myself because I think there trying to figure out something. Sometimes I wonder what it would be like to be able to take off my shirt and go swimming like every other guy does. or work out with out a shirt. But I dont know, I guess I'm still working on it. I do want to thank you for what I read though. I guess Im not alone. I guess I don't feel so weird as I thought I was. And now I know what it's called.
ReplyDeleteI'm 15 and I have Poland syndrome too. To be honest with you I hate myself because of it.
ReplyDeleteOh, I have just now seen tour comment. My 14 year old grandson has Poland Syndrome as well. Please, its been 13 years since your comment. I pray that you don't still feel this way...🥺
DeleteHey bud, im 20 with right sided poland syndrome. very similar to your case, but shorter index finger and syndactyly. Had a rather troubled upbringing and didnt enjoy or appreciate it, and I'm planning on getting a coverup tattoo as opposed to implants or leaving it.
ReplyDeleteI dont suppose you have details of the guy who got tattoos to cover it up? i would very much like to see if the results are worth the effort, or if it just hilights the deformity.
glad to hear that some people can keep their heads held high, enjoy themselves and get on with it
Hi Matt, here is a link to his website. His name is Matt too...Matt Gone... mattgone.net
ReplyDeleteI feel lost about what I tell my 6year son with PS. In the last few months so many kids have been so mean to him about it. He has had 5 surgeries since 6months old at the Curtis Hand Center in Baltimore. We live in Va and go there because it's the top hospital for hand surgeries. Kids are constantly making fun of him even teenagers. It breaks my heart. We don't make any deal out of his hand and he plays tennis and he was in a talent show and he has a great personality. But when people say they don't want to touch him, I can tell it is really bothering him. I just tell him to ignore them. IDK, what to do
ReplyDeleteAnonymous,
ReplyDeleteI think you really need to remind your son that he is valuable for just being who he is. There are many people in this world who just don't understand what it is like to have a deformity. When they are around something they don't understand, they often resort to name-calling or making fun of it because they are uncomfortable with it. We really just need to ignore them.
We need to find value in God's love for us because He loves us no matter if we are deformed or not. He cares about our hearts and we must hold His love higher than the negative comments we get from others.
I just recently found out that my wife and I are expecting our first child. If he or she has PS (which is unlikely since it is not genetic), then I would probably tell them everything I have said in the above paragraphs, but also try to have some fun with it. Like with me, I called it my "lucky fin". I also did a funny looking arm swing motion that my friends got a kick out of. If there is something humorous that can be done, try to use that to put people at ease so they are less uncomfortable (and then hopefully they will avoid making fun of it).
--Aaron
Anonymous,
ReplyDeleteKids will be kids. As he gets older and the people he's around are older and more mature, it'll get better. I cared a lot when I was younger, but as I get older, I realize that what other people think of me doesn't matter as much as I thought when I was younger.
I'm 34 and just discovered that what I have is ps. And although it is good to know there are others out there who are going through the same thing (and it's really not THAT bad), I just wonder why the medical world can transplant a heart but can't find a solution to ps. Seems really odd to me. I think the real problem with ps is that it effects people who are otherwise perfectly healthy. I am really fit, healthy and have loved to play sports my whole life. This seems like a parallel with lots of people with ps. So for me the hard thing to deal with is I look totally fit and attractive with a shirt on, then i take my shirt off and people kind of go "what is up with that?" - kinda sucks.
ReplyDeleteSo why can't we find a solution!!!! Or at least something that lessens the drastic look of it. There is really no reason to have a "perfect" body but you would think the medical world could solve this with one hand tied behind there back. In france they have done some biocartilage or lipomodeling and have had success! Let's but some pressure on some doctor or search on out and pass the info along! I would be happy with just a little lessening of it so you cant see the bones poking through and just have a smaller pec. The whole implant thing or taking a muscle from another part of the body seems risky and not the best results.
Let's do this, pass the info and find a way to get this done. For all of us!
Thanks to this cool guy for the site and of course he rocks!! Arron R has some crazy confidence but some of us don't. Like the 15 year old kid who hates himself because of it. I've been there and let's fix this and get some GOOD info for him and the thousand other people who will be 15 with no way to look the way they want to. THIS IS NOT BRAIN SURGERY! (pun intended) I don't get it.
Best,
Ross
Hey Ross: I have PS on my right side but without arm or hand malformation. I completely agree with you that technology today should be able to come up with something better than a "prefab" implant or sacrificing a back muscle only to get a slight improvement. I have done both and still hate my appearance without a shirt, not to mention my intimacy issues. I lift weights and am a runner. The whole "God made me this way" thing is a terrific way to look at it, but I do not buy that. I guess I will simply have to continue living my life with the cross I have to bare.... it sucks. Thanks for your input as it helps to know others feels the same as I.
DeleteSincerely,
Christopher
Hi my name is Janiece Proud I am 20 years old and I happened to stubble across your blog. Wow I believe god lead me here as your story is so incredibly encouraging. I have Poland Sydrome as well and I can definely relate to what you have written, apart from taking your shirt off for a game of ultimate Frisbee hahah lol. God is amazing the way he works. It has been in the last two years that I have finally shared my whole self to the an amazing bunch of friends god gave me. My family and friends are so supportive. I have struggled with accepting what I was born with for years and years but since I have fully become connected to god have I relieased that he loves me the way I am. It is christ who gives us the stregth each day.I truely believe god has got a plan for my far beyond what I can ever imagine and having poland sydrome is part of his plan. I have relieased that it is not until you accept jesus sincerly and personally that you begin to see how much you are actually worth and god PAID the price for us so we are of a high value to him. Your story I believe is powerful and GOD truely has a plan for you. It take confidence and a man with jesus in his heart to write about who you are what a blessing. I actually live in New Zealand the south Island (christchurch) near beautiful southern alp mountains. I thank god for who I am and the journey he is taking me on. For everyone out there with Poland sydrome yes I know it is really hard sometimes to accepts this and for other to understand how we feel but when we change our thinking around to what we think is a burden becomes a blessing. Poland Sydrome is not a diesese its not a sydrome its not a defect its not an abnormaity it simply who we are and sometimes wishing we were someone else blocks out view on the person we can become. God bless and thanks so much for sharing your story :)
ReplyDeleteHi there man!
ReplyDeleteI am a 32 year old guy from Cyprus and I also have Polland Syndrome and never actually took much time to look around in the net on this.
Just wanted to drop you a line.It'a really something finding out there are people like you out there.
Take care
Hi, I just wanted to thank you for sharing this. My 7 year old son, Zane, has Poland's Syndrome too. He is missing his right pec muscle as well. It hasn't slowed him down at all. He is a typical 7 year old. I worry that when he gets older he will be self concious about it. Reading this makes me think that maybe he won't be.
ReplyDeleteHello, my name is Neil Johnson, i am 36 years old and i have only today found the actual name for the condition i have had all my life. Reading the stories of all the other people who have poland's syndrome on this page has been a real revelation. My condition affects my right pectoral muscle (totally missing), underdeveloped right arm and smaller right hand, i also had webbing between the fingers of my right hand. When i was six years old i had two operations to separate my fingers, this was only partially successful, (although it was nearly thirty years ago). Like most of you i suffered through my childhood because of name calling etc and dreaded taking off my top in front of other people (still dont take off my shirt in the summer). As i got older i realised that my condition wasnt so much of a problem for other people, but more for me. Eventually the condition became less of an issue, i had girlfriends, boxed for my local club, joined the army, became an electrician and now i teach apprentice electricians. Having poland's syndrome hasnt stopped me doing anything, in fact it has probably made me more determined to succeed. I am now married and have three beautiful daughters, anyway enough about me, i just wanted you to know that reading the messages on this page has made me feel better about me, and i thank you for that. To anybody who has poland's syndrome "you are beautiful" and if you have children with the condition "they will be fine". I will stay in touch, take care.
ReplyDeleteps Would be interested in any feedback on chest or bisep implants.
Your story is impressive. I think you have the right approach to life and I hope your parents get a bit of credit for that.
ReplyDeleteHey there "nemo", i too have PS. The only symptom i have is the missing pectoral muscle, which is strange as some people have crooked fingers and crooked arms. At the age of 18 i found out that the have surgeries to fix the missing pectoral muscle: They simply take one of your lower back muscles and insert it on the pec that has the muscle missing. It does leave your back's nerves abit exposed which can be a little uncomfortable at times, but u get used to it. After 4 years or so my "alternative" pec muscle started to lose its size and once again i was left with uneven pecs...the doctor did another procedure where he took fat from my buttocks (depends where u got fat really) and simply injected it into the the pec. It is scary how even they look these days, the fat (stem cells and all) really does build up and becomes part of that muscle. So for anyone who is curious on any methods of helping their P.S here it is. Go ask your doctor, because they are brilliant. I have never felt so happy to take my shirt off while playing sports or going to the beach. I hope someone has benefited from this.
ReplyDeletehey man im thinking bout doing the surgery along the tracks, when i can afford it. But may i ask how much the surgery cost you?
DeleteGlad to hear you had a successful surgery. I had an implant put in but still not satisfied with the way it looks. I would really appreciate it if you would send me some photos of your chest so I can see. Also who did your surgery? My email is toedangboop@gmail.com thanks
DeleteWould Luv it if u could email me as much info as u can & a b4 & after pic. I am 36 about 2 b 37 n a couple days, I'm missing my right pec & hate that I miss out on not taking my 5 yr old daughter 2 the beach !!!
DeleteOk gang I am a professional dancer with PS. I am missing my left pectoralis major. I have played all sports and been coined by my family and some friends "The no muscle kid". I first noticed in 10th grade when I did not develop my left pectoral muscle in football. I was on the swim team, diving team, ran track, cross country, and cross country ski team. I also was in football and baseball from 3rd grade through Freshman year in college. I also played basketball and on the intramural team and broomball team in college that won the championship. I have been in rock bands and in 30 plays and musicals some of which I had an open shirt or none at all as in when I played the lead role of Joseph in the Amazing Technicolor dreamcoat with attractive girls all around me stripping me down to my loincloth and then having to sing in basically my underwear in front of 7,000 people. No one even noticed because my confidence was strong and my smile was big and my singing voice delivered a message from God and entertained so many. I am now a well established professional ballroom dancer and salsa dancer.....I did not even know there was a Poland Syndrome until tonight. I do remember the meeting with my doctor in 10th grade saying you have a missing Pectoralis Major but dont let it stop you from doing anything....other than that you are in perfect health. I have had some very hot girlfriends in the past and it has never been an issue to them. The way I see it is I still am a little self conscious but God is so good to me in so many ways, I am very thankful for all the opportunities I have had and still have in my life. On this Thanksgiving I thank God that I am alive and able to keep entertaining and giving to others. I am also thankful for you. Keep going all you "PSers" as my doctor said dont let anything stop you or get in your way of your dreams! PS to all PSers, I also wear hearing aids, which is just another inconvenience.....but keep going my friends, and percevere through it all. Also, remember to laugh a lot as life is really funny isnt it?!
ReplyDeleteHi Aaron!
ReplyDeleteI think you are awesome for having the courage, strength and love of God to be so open to people about having PS. I am 48 years old and didn't even know that my condition even had a name until I was in my early 40's! I've recently started a PS Support Group for those with questions and would love your input when people write with questions! Its at http://health.groups.yahoo.com/group/PolandsSyndromeSG/. Take care and God Bless!
Ric
Hi Aaron,
ReplyDeleteMy name is Paul and I also have Poland Syndrome on the right side. My hands are not affected.
Hi Aaron! Thank you so much for sharing your story. I have a 3 year old with P.S. He is missing his pec muscle and his hand & arm are smaller than his left. He had webbing in his fingers and surgery has been done to correct that. His condition is mild just like yours. Im just glad the he is a healthy boy. Im fear his teen years, i hope he will be strong and not shy away from being social with other kids. Thanks for your blog, this is exactly what i needed to see, other peoples experiences with P.S. God bless!
ReplyDeleteHi, my right pec is missing, my hands are fine, my right arm is larger than my left, although I did break my left arm very badly when I was a kid, thought this was the reason for the difference in size. I`m 43 and hate the way my body looks, I`m also happily married with 2 fantastic kids. Problems are to each of us as individual as we all are, luckily some can be hidden. I wish there was somewhere we could all go and meet up for a weekend, the only condition being swimwear for all.
ReplyDeletethat would be interesting..
ReplyDeleteI was actually in Puerto Rico this past summer, and my friend and i were talking to a lady in the pool about things to do in Puerto Rico. She had her four children with her. The whole time we were talking, her four children were staring at me and my chest.. lol.. it took everything in me not to laugh.. lol..
but it's not bad once you get older and you realize the 99.9% of the people you come across won't care and/or won't say anything.. and those that are that superficial, you shouldn't want to be around anyway.. I do get a little self conscious about it sometimes, but most of the time, I don't care.
I’m really impressed that threes so much about this subject that’s been uncovered and you did it so well, with so much class.
ReplyDeletelpromotional items
Hey Aaron, good job with the blog! We have the same physique which I think is pretty neat. Continue to do your thing bro!! I wish you success!!
ReplyDeleteTim
inspiring stuff, thanks
ReplyDeleteHello! I stumbled across your blog doing some research on Polands Syndrome. I am a nurse and I have been asked by a cardiologist to photograph a surgical case on a young man (28) with Polands for a medical journal. This post is so helpful for me to understand how to approach this patient preop when taking photos. And you are 100% right, this is a gift from God.
ReplyDeletewww.itsadarngoodlife.blogspot.com
Hey,ive just found out what i have has a name too!When i was 15 my brother pointed out to me my left peck was bigger than my right.Everyone found out about it/knows about it but no one really says anything about it.Im 35 now,it doesnt bother me as much as it used to.Its not that noticeable however im am still embarassed to swim/sunbath etc.I wish i could just be normal like every other guy having fun in the sun!Hey you young guys:this is not the end of the world.please dont freak out and hate yourselves over this.Ive been there and totally understand your frustration.You are guna have heaps of hot girlfriends because ive found that they(the good ones)simply dont care!
ReplyDeleteI have no pectoral muscle on my right side and first noticed this at 10 or 11 years old. With the exception of my early teen years I have to agree that other people simply don't care. I've been hiding my chest for over 30 years but when it has been seen by others (shirts and skins, at a pool, girlfriends) it's never really been an issue except in my own mind. I can't understand why, but it has been a constant in my mind every day. I will not wear a tight fitting shirt. Even if I were home alone a tight fitting shirt is just uncomfortable to me. No one is there to see it, but I can feel it! I find a button-up shirt with a collar (loose fitting) is my most comfortable choice.
ReplyDeleteMy hands are fine. I've played drums professionally for 20 years now. My arms are only slightly different and my right arm is still dominate and fully functional. I slap myself sometimes (literally) for being uncomfortable with my PS because I see others with much more noticeable physical deformations and I try to count myself as lucky. But then I put on a T-shirt that fits me perfectly... and take it back off because, in my mind, it focuses attention on my chest. I even quit working out on my Total Gym because that was making it even worse!
I believe my wife when she says it isn't noticeable... but at the same time it absolutely is noticeable to me evey moment of every day.
I do wish that a silicone implant was a solution, but I've never even seen it mentioned on any site containing information about PS. I don't want muscles removed and planted in my chest or fat injections. In the same way a woman gets larger breasts, I would like to have an implant equal in size to my left pectoral.
I applaud those who wear their PS proudly, but I have never been one of them, sad to say. Several of my friends are aware of it and I never suffer teasing about it... but in my mind I feel the asymmetry is obvious from 100 yards away and noticed by everyone. That's not the case I realize... but it's never been a rational discomfort I feel, only a constant one.
Thanks for the comment dave, I also have ps on my left side, all your words are exactly the same in my mind. your lucky you have a wife, im 18 and never had a girlfriend!!!
DeleteI am so surprised at how many people have PS. My 11 year old daughter was diagnosed when I noticed the deformity at 3 months old. She cries in my lap asking why her, often. It is so hard as a parent to watch your beautiful child agonize over this. I have done everything I can to support her and protect her so kids do not make fun of her. She is developing and we went to Victoria Secrets and got gel inserts to compensate for the absent breast. It seems to work for now, but if she wants surgery when she is old enough, I support her. If she doesn't want it, I support her. I commend you for having the courage to face PS. I will have her read your blog, it is inspirational! Thank you,
ReplyDeleteHi, thanks for your amazing blog. I'm a 23 year old female with ps. I started noticing it when i was in the seventh grade. Over my high school years i never told my friends for fear of being called weird or being different. Now i've learned to deal with it. I accept it even if i don't like it. There's this guy i like at work. We're friends but i don't know what to do? Should i tell him or not? Any ideas? Anyone? You can contact me at kellycarter2122@yahoo.com. Thanks.
ReplyDeleteHello Kelly, My daughter also has ps, it effects her right hand, not just fingers her whole hand is small) and her right breast. She has always been honest with people that were important in her life people that didnt really matter she didt tell everything just about her hand and only because everyone could see that it was different, she is an AMAZING young woman now pregnant with her second child. I just found out today that having a missing breast is still difficult for her to accept this makes me sad because I have ALWAYS told her to be proud of who she is not how she was made, I did not give birth to her but I raised her from 7 years old, she is BEAUTIFUL inside and out. Be honest with people the ones that cant handle it DONT deserve you as a friend, girlfriend or a spouse, TRUE LOVE IS UNCONDITIONAL..Oh and our name is also Carter. Keep in touch find me on facebook Trina (Garrett) Carter..
DeleteHi Kelly,
ReplyDeleteI really think you should be honest with your friend. If he is a good friend, then he will be fascinated with it instead of disgusted by it. I think it can be used as a gauge to see what kind of a man he is. Depending on how he reacts to your PS, then that can be a good way to tell if he is a man worth investing your time into.
Thanks for your comment!
--Aaron
About six months ago I learned that what I have is Polands Syndrome. My symptoms are pretty mild compared to some other peoples. I am simply missing the pectoral and have an inverted nipple because of it. It always bothered me and I remember the shirts/skins game time terror too. I'm glad to hear other peoples stories about their experiences and hope that the young guys that are having trouble dealing with it can keep their heads up. Like the Dancer that commented before, I have had some beyond beautiful girlfriends and they never seemed bothered by it at all. I had nervousness breaching the subject with them as I usually told them before they saw me without a shirt and was always pleasantly surprised that they were so good about it. At the same time I also think that for some people a corrective surgery might be a good option if it is available for their specific condition. Best to everyone and thanks for sharing your stories. It's nice to relate.
ReplyDeleteI have PS.. I've commented on this post before.. But so far In my life (I'm 25 years old), I feel like PS is what has kept me from ever being in a relationship.. Friends know about my PS, but ive never told any female that I was dating about it, and never felt right trying to take things to the relationship level without telling them. I'm interested I'n a young lady now, and want to tell her, but don't know about how going about it.. how does everyone typically go about telling someone their interested in that they have PS??
ReplyDeleteAnonymous,
ReplyDeleteYou should just be honest and upfront with her. Everyone appreciates honesty, and the longer you wait to tell her, the harder it will be. I told my wife about it on my second date with her. She thought it was fascinating! I know it's hard to know exactly how someone will react, but I have never had anyone react in a negative way after I have told them. The way you should go about telling her is just the same way you'd tell her anything else about yourself. It's no different. Be brave!
--Aaron
Hello. My son is 14 months old and was diagnosed with it today. We new something was right when he was born, but we were told he had an inverted nipple. But the older he got and the more active is was, the more it was noticed. He doesn't use his right hand that much. He acts as if it's weak. But the doctor said thats part of it. His shoulder blades are also uneven, so when he walks, he looks lopsided. He was diagnosed with scoliosis back in May. But when we took him for xrays today, they said its completely gone. His spine looks great. Thats the power of prayer. This makes him who he is. God created him this way for a reason. He is perfect to me.
ReplyDeleteHe also has a missing rib.
ReplyDeletei am 17, male, from the UK and have PS too. i have the same problems as many stated, worrying about what others think, think - why me?, emotional and mental problems worrying about what will happen in the future as my body changes more so than my other side. what i hate most about my particular case of PS is the bent fingers and irregular bone formations in my left hand. my hand is about 2/3 of my right hand but i have only 2 joints in each finger and 2 fingers have quite significant bends. i have trouble socialising with the opposite sex as it is always in the back of my mind - "they will think im weird" and think whether i will ever have a relationship when im older where this is not a problem. i also have little confidence always trying to hide my left hand.
ReplyDeletei was also concerned and read your other blog about the condition and passing it onto potential children, that is a relief!
i admire your courage and bravery for posting these pictures and sharing your life story, it made me more optimistic about my own future.
hello I'm a 13 year old girl I have poland syndrome aswell but I have it on my left hand I find it hard sometimes like in pe I always cover up my hand because I dont want people to find out it gets my really down sometimes and I think why does it have to happen to me :(
ReplyDeleteHi i'm a 14 year old girl and I also have Poland syndrome. I loved your article, especially about the part were it doesn't matter in the grand scheme of life. I am only missing my left pectoral muscle so it is very easy for me to cover it up and only a few of my friends know about it. My deformaty isn't a huge part of my life, My friends say i'm too self-conscious about it since whenever I wear a vneck i'm constantly pulling my tanktop up or always worrying about people seeing that I only have cleavage on one side. I feel like people are always stareing at it even if I know there not, I mean why would they be? I'm very blessed that I can easily cover it up but sometimes I wish I could just go to a store and by a regular swimsuit or regular bra. When I get older I could get surgery to correct it but I don't know if I should do that. It would be so much easier just to fix it and be almost normal, but should I take the easy rought? I am who I am, God made me this way for a reason. Sometimes the easy rought is not always the right route. If you have poland syndrome you should find someone who loves you for who you are, don't try and correct it just to have the bodies like the ones you see on tv. Find somebody who you will accept you just the way you are, even if you're like me and a simple surgery can change you to be normal. Remember god made you this way for a reason. Embrace who you are. (:
ReplyDeleteHi i'm a 14 year old girl and I also have Poland syndrome. I loved your article, especially about the part were it doesn't matter in the grand scheme of life. I am only missing my left pectoral muscle so it is very easy for me to cover it up and only a few of my friends know about it. My deformaty isn't a huge part of my life, My friends say i'm too self-conscious about it since whenever I wear a vneck i'm constantly pulling my tanktop up or always worrying about people seeing that I only have cleavage on one side. I feel like people are always stareing at it even if I know there not, I mean why would they be? I'm very blessed that I can easily cover it up but sometimes I wish I could just go to a store and by a regular swimsuit or regular bra. When I get older I could get surgery to correct it but I don't know if I should do that. It would be so much easier just to fix it and be almost normal, but should I take the easy rought? I am who I am, God made me this way for a reason. Sometimes the easy rought is not always the right route. If you have poland syndrome you should find someone who loves you for who you are, don't try and correct it just to have the bodies like the ones you see on tv. Find somebody who you will accept you just the way you are, even if you're like me and a simple surgery can change you to be normal. Remember god made you this way for a reason. Embrace who you are. (:
ReplyDeleteThanks for your comment, Lilly! As an 8th grade teacher, it is really encouraging to hear you, as a 14-year old, to say such wise words. :-) Blessings to you and your future!
ReplyDelete--Aaron
Im an 18 y/o male and also have poland syndrome on my left part of my chest,nothing wrong with my hands. i am starting to not really care about it anymore and just live life as normal. We are all different in ways. if someone asks about it I just tell them. the biggest let down is not being able to get a girlfriend because of poland syndrome, iv never had a girlfirend and really starting to bite my finger nails as im getting very desperate. but as i said im starting to live to normality and just taking my shirt off when going swimming or going to the beach. i believe you dont have to have a full amount of muscles in your body to be a man, its what inside that counts, its your mind and attitude, I really want to go on a tv article about poland sydrome, I really do. They should seriously do an article about that. anyways great to see all the other comments, everyone you just need to be strong and have courage, if someone laughs at you just flatten them thats what they deserve. you will find that most people wont laugh at you because your born that way and cant do nothing about it.
ReplyDeleteFraser
QLD Australia
Hello! I love this post!!! I am a 19 year old female and I have Polands Syndrome on my right side. I have learned to live with it and now I'm not ashamed at all! Most people don't even notice! I don't know what it is but all of a sudden I am proud to have Polands Syndrome and I think it's made me what I am today! Sometimes I do get a little down about it or feel self-conscious but then I'll read this post and it makes me feel so much better!
ReplyDeleteThank you !
Sarah
That's amazing! I'm a 39 year old male and only a select know I have PS. I am not as brave as you.
DeleteJason
Hi, I'm 52 years old and have PS affecting my left side. I' haven't taken my shirt off in public since I was 10 years old. I still hate looking in the mirror at it. I've tried a procedure where the surgeon lypo sucked the fat out of my right side to try to make them somewhat symmetrical but it didn't work. In my opinion, growing up with this condition was horrible for me. I quit playing football because I wouldn't take a shower with the team after practice. I could have been a great athlete, ran my 40 in 4.6, fastest on the team, but I just couldn't get past the embarrassment. Kids are cruel growing up!. I never knew there was that many out there with this condition. I would love to have a support group where we could all just open up about this condition. I wish that I could have talked to someone else with this condition years ago, I think it would have made it a little easier growing up. I told my wife, when I die, I don't want to wear a shirt in the coffin but I don't think she'll accommodate...Ha Ha. Lol
ReplyDeleteHi all, I am a 45 year old male with a moderate case of PS. I just found out today what my condition was called. When i was born the doctor told my mother that that it was hereditary since my uncle had it so I never really thought about it that much. Like most of you I had my moments of insecurity but most of the time I did'nt let it get in my way. It is pretty cool to finally find out that my condition has a name, other than deformity. For you younger guys out there, please try to not let it get in the way of you living life.
ReplyDeleteI have Polands Syndrome as well, I am a 16 year old male and i have it on my left side. I hate being in situations where everyone is taking off their shirts and i think twice about doing it myslef. I dont like that im not able to build up my arm but hey, im stuck with it and there is no changing it so i might as well get used to it and make the best of it i can. After reading your blog i feel way better about the whole thing and try to look at it the best i can. its comforting to know i know im not the only one dealing with it.
ReplyDeleteHello everyone...
ReplyDeleteIt is always nice to see that othet people too have Polands Syndrome, i.e. I am not alone on this planet...I live very far away from all of you...Cyrus...an island in the eastern mediterranean, very close to Greece and Turkey...
It was definitely not easy growing up with this chest deformity, faced all the goggly eyes on the sight of me being naked and all those things...thank god as growing up things got much better as I processed all those experiences. Finding people that love you for what are and not focusing on superficial looks of a person was my strongest weapon to better self esteem and cooping with bad memories and tough present, especially when it came to intimacy...After some time people were surprised of how normally I act when being naked, and felt sad about their vanities!
Anyway...what I am trying to say is that it was not very easy growing up...but things are so much better when you get over to the other side!
My warm regars to everyone...and keep smiling!
Hi, a great blog that will help people with poland syndrome, I am 40 and was born with it. When my breast started to develop I started to suffer more psychologically because of the condition than physically. Physically I have always been able to do everything but I have had to do physic for a few years due to scoliosis, which I think is the result of the muscular imbalance. Even though I am forty, I still feel the same when it comes to going swimming. I have three children who would like me to go swimming with them, but still now, I feel self conscious despite having had reconstructive surgery when I was 18. My breast has changed with age, I have breastfed all three children despite the syndrome ( with both breasts!), still breastfeeding my 2 year old and I felt extremely happy to be able to do it. However after three children, my breast still looks asymmetric but still better than if I did not have any implants(all right front and back muscles missing). I would like to know if there are any women out there who still feel like me after so many years and as I am going to the beach this summer and already stressing about it, could anybody tell me if there are some good swimwear I could find to hide my right side? Thanks for this blog.
ReplyDeleteHi Anonymous, I encourage you to go to the PS support site I subscribe to on Facebook: https://www.facebook.com/groups/Polandsyndromefoundation/
ReplyDeleteOr the website at thepolandsyndromefoundation.org
You will likely receive much more of a response if you ask questions on there. Much more of a wonderful support and online community there. Thanks so much for reading!
--Aaron
Wow, you are truly amazing. I am a 48 yr old female and I was born with PS on my right side. Due to not having the major pectoral muscle, my right breast was much smaller than my left. Growing up with this condition brought on tons of problems, i.e. would I ever get married, would someone love me when I felt like I was so deformed, what would my friends say, always trying to find the perfect bra so I could make the padding work, hiding my bras when I took them off, so my friends would not see them, oh...and swim suits..that was a nightmare all by itself. I also went through 2 corrective surgeries (painful) and had to figure out how to cover for my time away from the public. My friends would ask why I was in the hospital and...well I think you get the point. As I grew up it wasn't that big of a deal. I am a very happy mother of 3 beautiful girls. My experience has made me really see what is important. I have taught my girls to be strong and the things you are lacking in life, God will make up for it 100 times over in other areas. Never be ashamed of who you are.
ReplyDeletemy name is leanne im 22 and was diagnosed with polands syndrome 2 years ago, when i finally had the bottle to tell somebody. since then iv had 4 lipomodeling operations, my 4th was 6 days ago slowely recovering.
ReplyDeleteit took me a long time to open up about it but its the best thing i ever did. if any one wants to talk to some one about it im here :) email me on leanne_11@hotmail.co.uk
Mike 31. Left pec missing hands arms not effected. Relate to he shirt/skins stories. Didnt realize so many others have this same problem. It was difficult to grow up with. I guess Ive grown to accept it. I grew up fearing my girlfrinds wouldnt like it. But in actuality its never been a issue. My current girlfriend is more facinated I think. Id like to tell you younger guys not to wory about it. I think you just accept it and be yourself. Dont dwell and realize you arent alone and that what you experiencing has apparently been eperienced by may others.
ReplyDeleteI'm a 63 year old man with PS. I have no left pec, a shorter arm and a smaller hand. I believe that the PS has a minor impact on neuromuscular control of my fingers. My case is mild compared to some I've seen.
ReplyDeleteNo doctor that I saw as a kid or adult knew about PS. The Army didn't either. I played sports, served in the Army, and never let it get me down. No one made an issue of it. I had difficulty doing monkey bars and climbing rope, but other muscles developed to compensate. I went without a shirt when I was a kid and it was rarely commented on by others.
I learned of PS when I saw Bryce Molder interviewed on the Golf Channel a dozen years ago. He's a good example of someone who pursued his goals despite the condition. Perhaps I was lucky not to know there was a formal name for the condition because I never gave it a lot of thought. I just did what I wanted to do.
I encourage everyone with mild PS to pursue what you love. Don't let it stop you except to the extent you can't physically do it.
Great story and a real insight into Polands Syndrome, Love your determination.
ReplyDeleteI am a personal trainer and have a client who has PS and would love to know what sort of training regime you have, I saw you could do pushups and pullups. Have you ever done any dumbbell work? and is there anything you definitely shouldn't do?
My client is only 15yr and really shy, just want him to feel comfortable and really want to help. The lack of information on this subject is awful and would greatly appreciate your knowledge.
my email is stevan87@hotmail.co.uk
would love to hear from you
steve
Hello I'm a 19 year old female I have poland syndrome on my left side my breast and hand on the left side is only a little smaller then on the right...I live a very normal life,all my friends knows about my ps and I had boyfriends aswell and they knew about my hand...recentley I met a guy I really like and he really likes me too but he does not know about my ps and I hide my hand when I'm around him.I really want 2 tell him but I'm scared of what his reaction might be and I don't know when it is the right time to tell him please help??
ReplyDeleteHi Anonymous,
ReplyDeleteBe honest with him, have a serious conversation with him (since it is a big deal), and just tell him. Depending on how he reacts to you, that will give you more insight on who he is as a person. If is loving and understanding, then great. If his reaction is disgust and disrespect toward you, then you know that he is not as great of a guy as you thought he was before.
Opening up and sharing stuff like this is the only way to really know who people are and what they think. Sometimes it is scary, but it is beneficial in the long run.
Thanks for sharing,
--Aaron
Hi Aaron,
ReplyDeleteYou're awesome for coming forward about Poland's Syndrome. I am a 35 year old woman and my PS was not discovered until I started going through puberty and one breast did not develop. Since that time it was years of a prosthetic breast and bras with pockets and then finally reconstructive surgery at age 21 when I finished developing and they realized the extent of my PS and had to reconstruct my left chest muscle and breast.
Now I am pregnant and facing all of the issues associated with breast enlargement, nursing bras, and breast feeding for someone associated with PS. I have been lucky enough to find medical articles about what I may or may not be able to do and expect with PS and breastfeeding and changes to the breast with pregnancy.
So I just wanted to post on your blog so if any other women out there were searching and feeling overwhelmed, to please know that they are not alone and that if you search and look hard enough you can find information online. (I only wish I had access to an online network when I was going through everything in my teens).
It looks like PS is as unique and different as everyone who has it and we all face different challenges but at least people are finding each other online through blogs like your's, so thank you.
I am 34 yrs old and also have ps I am missing my major on the right and my arm is smaller. I have never had issues being held back physically. Did gymnastics soccer. But it was hard as a teenage girl developing different from other girls. I don't wear low cut shirts but for the most part I forget about it (unless there's a new man in my life). I was able to nurse all my babys on both sides just fine. I didn't even know the name of what I had til about ten yrs ago.
ReplyDeleteMy PS was discovered during my double mastectomy last May 2012, because I was missing the left pectoral. I wasn't diagnosed until recently, though. Weird. My left breast was always considerably smaller and asymmetrical to the right. I also have a non-union clavicle and my scapula is asymmetrical to the right also.
ReplyDeleteI am a 35 yr old woman, who just now discovered I have PS. My right breast is under developed with an inverted nipple, my right hand is much smaller with crocked fingers, my arm shows a significant difference in size compared to my left and my pit hair is much lesser on my right side. I have spent many years trying to figure out why I was different. After showing my dr many years ago and getting a "hmm" and nothing further I chose never to ask another dr. I was told recently I had mild scoliosis and researched the heck out of that but it didn't explain my deformities. U don't know how many hours I have spent reading up on the wrong things. I was actually looking up scoliosis and uneven breasts a bit ago when I came across PS, as I looked at the pictures of people's chest, I thought that looks like me. Then I came across pictures of smaller hands and I clicked on your picture. As I read your story I burst into tears, it's two am so I woke my husband. He thought something was seriously wrong but really I was crying because I was happy to finally understand. I have never met anyone with PS as far as I know. I have always heard unevenness in breast was completely normal as people brushed my concerns, and I always found myself eyeballing people's hands looking for a difference. Now that I know that I have PS and it is not genetic I feel like I can stop checking the hands of my children, hoping they don't have to feel the embarrassment I felt or feel at times. I can say I have learned to live with it now but I have never been comfortable. Thank u for your post, all of the responses fueled my tears as I realized I wasn't alone.
ReplyDeleteI am wondering if sweat glands r affected by PS I don't sweat much under my right arm and when I do it tends not to smell
I am 25 year guy with PS from Serbia.When i see your pictures i would say we have exacly same differences,i have no pec muscle,my arm is shorter and my hand smaller and fingers crooked but its on my left side.I honestly can say that this condition destroyed my life.My mother says that when i was kid i use to smile a lot and was much happier and now i am just always depressed and uniterested at anything.I believe when i realize that i was different from other kids (and other kids pointed that to me) i become very sad .Тhis condition kills my confidence and puts pressure on my brain everyday,I mean in some days would just laugh about it but now( when i am writing this)is one of those days i severly depressed about it.I mean people live with worse handicaps,syndroms,diseases but i cant look at people that are more fu***d up then me and feel good about me,like i feel good that i am not so "damaged" like them,I JUST CANT.i mean i can play sports,swim or do almost anything that normal person do.I like sports, any kind of sports ,i play football,basketball,handball,voleyball and i play better then many people with 2 same sized hands,arms and pecs.i trained football(soccer,my big passion) when i was younger and when i was 14 age i started training handball,i remember thinking i gotta train handball it will start developing muscle on my left chest side,but it didnt and it was terrible shock.Maybe beacuse that i started smoking marijuana and i am smoking till these day,i think it helps me,it helps me get away from reality thats for sure.I realized that when i have job and i am working i dont think about my condition,like i go to work then after work i see my friends and then i go to sleep.But right now i am unemployed and very depressed,often alone with my thought,many times during day i go to mirror and look,i put my hands and measure them,i measure my arms,i google poland syndrome all day and watch all videos,all pictures and i just feel terrible.Sometimes i punch my affected hand,arm or chest with my right fist.i read some comments and i dont believe god made us special,we are special ones,is that what people with severe mental problems even sever physical problems think?cmon man...you can see clearly i am atheist but some things are in life just unexplainable.and that thing about shirts ,yes i was too ashamed of taking off my shirt beacuse of this condition,but then i realize people with normal chest dont want to take off their shirt beacuse they have too much hair on their chest?!and they dont look like models or something,so man just take that shirt be proud as peacock,yes eyes are watching but they cant hurt you if you have confidence in yourself.I think i will get throught this and go on with life,i certainly hope so.cheers from serbia!
ReplyDeleteHi there,
ReplyDeleteOMG I am so thankful for this post. I have a little 5-year-old daughter with PS and I am so worried for her. She is totally fine (and athletic) and her only obvious symptom is the missing pec muscle so it is really not visible when she's wearing clothes.
When we've been to the pool with friends or she's had her shirt off, nobody has ever really noticed so I guess she has a mild case. But it's becoming more visible as she gets older and I worry that she'll have emotional issues as she's growing up. I really, really worry about her teen years.
I understand that it's really very personal and that she may be fine about it, who knows, but I also know that she may go through some very hard times and I feel so sad. I cry every time I think of it because I feel so guilty. If only I had done something different... if only I had not done whatever made her have PS...
I worry about her relationship with boys... her breastfeeding... her everyday life. Our society can be so vane... it can be very tough.
We are homeshoolers and that helps very much. She is surrounded by loving people who respect and care for her and would never make fun of her. She is never alone with kids who could possibly tease her. But still... she'll get older some day and have to deal with it on her own :(.
I wanted to ask all of you out there who have PS: When did you find out? Do you remember the moment when you realized that you were different? We haven't talked openly to our daughter about it and are still wondering if we should. On the one side, we want to let her know (so as not to have any "secrets"), but on the other hand, we don't want to make it into a big deal, like something she "has to" know. It's not like she can really do anything about it. But I fear that she might realize when she's 8 or 10 and be very surprised and devastated about it if we don't tell her now.
I would really appreciate some help with this! My love goes out to all of you who have been through some tough times because of something that really should not be a big deal. I wish we were all less "beauty" oriented and more embracing of each other.
Hi unschoolingmom,
DeleteYou did not do this to her. It was a random event. Please don't feel sad, because many people live wonderful lives with Poland Syndrome. It's usually people who are too focused on their appearance that say it ruined their life. So, focus on raising your daughter in a way that praises the good things that come from the heart rather than outward appearance, and you will do a great job! If you want to talk to others, feel free to visit the US Poland Syndrome group on Facebook: https://www.facebook.com/groups/polandsyndromeusa/
People post on there daily and support each other when things are going tough. Hope to see you there,
--Aaron
Thank you so, so much Aaron.
DeleteI guess it's going to take me a while to accept that it's not my fault. And all I have right now are fears about her future, because she is totally fine!
As for focusing on praising her actions instead of her beauty, I totally agree. I try to always do that in general, not just because she has PS. But lately I've been feeling bad every time I exclaim "OMG, you're so beautiful!". I really only say it because she is beautiful all over: kind and sweet and amazing... not because she has a good hair day or because her clothes look nice. But I still use the word "beautiful", and wonder if she's going to take it the wrong way.
It's hard to do things right all the time... and it always depends on who you're doing them to, right? I understand how important it is to not be superficial and focus on the real important qualities everyone has, especially in a case like mine.
Thank you so much for your insight and your kind words. They really mean a lot to me. I went on the Facebook group and asked to be a member :).
Thanks for this blog I also have right sided poland symdrome I also am extremely active I can do pushups and all that but I have found the hard way that has extremely lowered my upperbody strength which concluded in employers either firing me or not allowing me to prove my self to this day I cannot bench over 50lbs and my left side pectoral is about the same size as yours which makes the right side an eye sore, I personally do not like my deformity but I live with it I have no tattoos but I am uncomfortable removing my shirt unless infront of friends or family this is extremely rare in canada and I have to this day not personally met anyone else with this problem would like too know of this facebook page if possible. too all of us with this birth defect don't be discouraged work as hard as you can no one can put you down for it, if so just ignore them life sucks everyone has there own problems :D
ReplyDeleteNice blog, i too have PS though i never knew how it was called untill 2 years ago. Im 37 years old now and i never payed too much attention to it. All my life i played sports and like you i was scared when the though of taking my shirt off crossed my mind. I really cant tell how people didnt notice it or how did i managed to keep it a secret so far. I act as normal as i can be but always trying to hide it. The only people that knows are my closest family members. I have a functional life and havent look at it as a disability because is not. I wish i can tell you that i like how it look but i dont, i just learned to live with it and still be a normal person that loves his life and how affortunate ive been all this time.
ReplyDeleteHi, I'm Benjamin and I'm 24 and I also have Poland syndrome. Something told me to do some research and figure out what was wrong with me. And I came across "Poland syndrome" for the first time today. I always felt like I was the only one with an undeveloped figure. My Poland syndrome takes place on my right side as well. My right hand is a tad bit smaller than my left and I'm abscent of a right pectoral muscle. But now knowing that I'm not the only one with the rare body disorder.....I feel so much better. Thank you so much for sharing your story (*^_^*)
ReplyDeleteHi. My daughter has Poland syndrome
ReplyDeleteI am 29 year old male and I think I have have Poland Syndrome on my left chest and wanted to seek clarity if it is indeed Poland syndrome when you're missing a major left pec. I have no other deformities - my arms are normal and since I usually wear business shirts, the missing major pec is not noticeable. I am not a beach or water person so have few reasons to remove my shirt in public. While I have a hairy chest, my left chest with the missing pec is distinctively hair-free. I was wondering if there are many people particularly males out there who have had corrective surgery. Also when you do have surgery, is this merely a cosmetic solution or does this assist physically/psychologically to consider both arms as equal strength-bearing.
ReplyDeleteHello I have a 7 month's baby boy with Poland syndrome. I am from Greece and here they don't know much thing about it. I am working about him how can I communicate with somebody to give me advice?and bravo about thise link you made
ReplyDeleteIm not sure how good of advice i can give. But ive lived with poland syndrome. For my whole life and i have only notised small amount of this that i cant do that other people can. some people say it would suck, but i think it drives me to do my best ever day. Glory to god.
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