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Poland Syndrome Girl :-/

Today will be my first day that I will be telling people I don't know that I have PS. I'm sorry if I sound like a big baby. Okay now letsjust go straight into this! Well, I'm a young 20 year old female with a rare birth defect called (Poland Syndrome). My mom told me what I had when I was very young and she explained to me what I'll be facing when I'm older. It didn't hit me until I was the 6th grade. That's when I started to feel very self- conscious. I knew that I wasn't like the other girls in my class. I had to use a thick bra pad so I can put it on my right side so it would look the same. Even though no one really notice I still felt like they were staring at me. I would always walk with my right hand on my glasses or on my other shoulder so it would cover my right side. I never step foot in the pool when it was time to swim in gym class. All the girls would ask me why I didn't want to go in the pool and I would make up some lame excuse as to why I couldn't go in. Yes, I could have worn a shirt in the pool but I kept thinking what if my bra pad would come out and just float in the water. Or when it's time to take a shower and maybe one of the girls might accidently walk in on me and see that I have only one breast! What would she say?? I cried a lot to my mother and the only thing she could really do is give me some encouraging words and a warm hug. It would help for a day or two but the truth is the only person that can make me feel good is myself. I have to be the one who would tell myself that no one is perfect and that there will be a guy out there for me who would except my flaws. PS affects one side of the body. Most likely the right side and can cause webbing of the fingers but not always. My fingers were webbed but I had surgery to separate it when I was just a baby. I try to hide my fingers when I'm around kids because little kids do not think and they'll just burst out laughing or they'll be terrified of me. Well... This is my story. If you have any questions please feel free to ask. I suck at writing by the way. Haha
JT12345 JT12345 22-25, F 15 Responses Jul 19, 2012

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My name is Jennifer and I'm from Rochester. I too, have this condition and I'm twenty years old. I tried so hard to find someone else that understood how I felt. Your still normal even if you don't feel that way. My email is daojennifer@rocket mail.com in case you want to talk about it.

I too have PS. I am 46yrs old and have had many surgeries in my life time starting at age 14. I was also told very early that I was different and found lots of ways to hide my right side but my mother and I never knew there was a name for it until 2011. She had secretly blamed herself for me having PS. I have PS on the right side and have over come many things, anything with strength I do with my left , I write with my right. I played softball for many years I pitched fast pitch. The only time I ever truly felt comfortable in clothing was when I was younger and my mother made my tops and blouses. I wish I would have had this kind of forum to discuss the issues we go through when I was younger. Why do we have to spend sooooo much paying for bras and swim suits and still never feeling comfortable.

I am the mother of a lovely little girl with Polands. She is two. This year she will have surgery to correct the webbing on two fingers on her left hand. Her arm, and hand are quite a bit smaller. The thumb is very short. There is nothing planned that will be done to it. She has a nipple on the left side but no pectoral muscle. The doctors say we have to wait and see what happens with her growth. I am hoping for advice. My concern is mostly - what can I say and do to be as supportive as possible? What does a mom say that is helpful? What can I say that she will need most from me when she is upset about it? What have your experiences been with your parents? D

I just recently found this site and what do remember was that I competed in any athletics I wanted and did what doctors and others said would not be possible. I am 46yrs old and I will let my mother know about this site because as a mother of a daughter with PS she could relate better and give advice as to how she handled my questions, concerns and roller coaster of emotions.

I'M SORRY IT TAKES A COMPUTER FOR SOMEONE TO TELL YOU THAT THEY HAVE IT TOO. O.K... NO NEED TO GET THE IMPLANT. IF YOU HAVE PAIN TAKE YOU'RE PILL'S STAY HYDRATED. LOVE ALWAYS!: TAKE CARE. JOHN MAY

I have a 10 year old daughter with PS. She has seemed pretty accepting of it until this past Sunday, and she broke down on me telling me that she'll never be like her friends. We have been to our local hospital's women's boutique and they have fitted her with a bra that looks great, but she's 10 and reluctant to wear it sometimes. I worry about her self esteem and me saying the right/wrong thing. Any advice from your point of view would be great. I love reading everyone's responses. I'm curious how to deal with the dating situation and boys in a few years. To tell, not to tell, who to tell, etc.
~Concerned Mommy~ =)

I am 17 years old and am just finding out there is a name for wht i have( i havent been diagnosed with it but i only been to the doctor for it once) the the only thing the doctor told me was i was too young to do anything. I thought i was all alone and its good to see im not...its bothered me since it became apparent and just can't enjoy myself on family vacations. i feel like everyone is staring at me...I've managed to hide it with padding in my bra but lately its been really bothering me...thanks for putting ur stories out there

You're welcome. :) I understand you completely. If you need anyone to talk to or have any questions I'm always available. And padding in the bra does help. And to keep it in place pin it. They sell at the store paddings for bra if that's what you are using. Don't use other objects like toilet paper or clothing. It'll look different.

Hie, I have the exact story which you narrated. I am 21, with Poland's syndrome on the right side on my body. I also have a webbed right hand with short fingers which were separated by a plastic surgeon when I was 2 years old. I have had similar experiences when it come to swimming and gymnasium. I am always conscious that my silicone breast prosthesis will fall off and because of this insecurity, I wear a very tight bra which leaves black stripes on my body. Sometimes I do not feel confident enough to carry off shoulder dresses and tops. I feel conscious to wear low necks . I am too under confident. Then I met a guy who does not care and loves me. He tells me, "did I know that you were so special when I started liking you??" I feel grateful to the almighty for showering his blessings in the form of such a wonderful companion.

Your story is so similar to my story. Very cool! Glad you found someone who excepts you for you. I also did too. It's very nice. :-) Message me anytime. It'll be nice to talk to someone who has the same thing as I do. I'm also going to have corrective surgery in a few months. I'll tell you how it goes if you want to know.

It would be very helpful if you tell me about it. I have been also thinking about it but the possible complications freak me out. :)

Okay. Will do. Oh boy! I hope theirs no complications.

By the way, I am from India. I have not found anyone here apart from my family to whom I can talk about this. People don't even know what it is and 'corrective surgery' is not so popular among common people.

India? Cool! I'm from Waterbury, Connecticut. Do you have FB? We can add each other there and that way you and I can talk since you don't have anyone to talk to. Yeah I understand.

joana.torres18

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Hi JT,
This is also my first day 'coming out...' It kind of feels good... I also have ps and have been dealing with it my whole life as well... Reading your story was like reading my own. I'm 29 now, have had corrective surgery going on 15 years. And still I deal with all the insecurities. Best of luck to you.
~Danielle

I am a 23 year old women who also suffers from PS. I can completely relate to you when you talk about your struggle. I recently had a Co worker tell me my bra made my boobs look uneven. Little does she know I have a birth defect. One thing I really have struggled with is who to share my PS story with. It's hard to know who you can trust. There is hope. I met someone when I was eighteen and he has been very accepting of my PS. I do really worry about people finding out then sharing it with others to hurt me or make fun of me. Good luck in the future.

You sound like are strong young women.

My grandson, 7 months, has it and we know some of the challenges we will be facing but I thank you for your stories.My grandson is the most beautiful baby boy I have ever laid eyes on. He doesn't suck his thumb but puts his whole undeveloped hand in his mouth and it's so cute.


There is someone for you out here but understand that God created you for a purpose. We all have insecurites or flaws and children can be very cruel but keep your head up and don't focus on your physical flaws but the person you are on the inside.
My words may mean nothing to you as I haven't gone through what you have but I empathize with you and will pray that God gives you the strength to know that HE knows you are a beautiful wonderful creation that HE made just for himself.
You may not be religious but HE has always loved you and in your times of depression come to HIM and HE will ease your pain. I don't even have to see you to know what a beautiful young lady you are and I'm proud that you are able to love yourself because you are worthy.

Because of him I will dedicate my life to donating and helping others with this condition.

God Bless you JT.

Thank you for your kind words. I really appreciate it. Your words does mean a lot to me.

I have found a guy who excepts me for who I am and I am so grateful I have him in my life. I know god has sent him especially for me. Thank you! :)

Hi I am a sophmore in highschool with Poland Syndrome, and I am missing my left pectoral muscle. I completely understand where you are coming from, being afraid people won't accept you the way they should. In my point of view it's ok to have those "feel sorry for myself" moments, everybody has them. It's hard to always look on the positive side, worry after worry, what if after what if. Honestly though you shouldn't worry about people finding out. "Those that mind don't matter and those that matter don't mind". It's true, if they look at you different (which i'm sure people won't) life goes on.You shouldn't let the fear of other peoples judgement slow you down. Go swimming, have fun. And if your pad falls out of your bathing suit. Make a joke about it, "woops my boob fell out". & lucky for us we're girls so we can cover up our differences with a bra and a pad, guys don't have many ways to cover theirs up. People are more caring and understanding than you might think, not everyone, but most. (:<br />
-Shelb

Thank you for your kind words. I will try not to care what others think of me although it's hard I will keep a positive mental attitude. It's true what you say, the people I care and love the most don't even see anything wrong with me. They see me as a strong, beautiful girl with a great personality. Thanks again for writing to me.

Don't let it defeat you. Stay strong. I can't say I know what it's like, but I know what it feels like to be self conscious of something. You aren't alone. And don't say you suck at writing, most people don't even go to the detail you did with your post, so you're a lot better than half the people who write on here.

Thank you! It means a lot when people take the time to write. :-)

Yes JT stay strong and confident, your story was very good and touching. I know what you feel. I have lived with PS for 48 years and am in tuned with my body more then ever.

I will and thank you.

Hi JT<br />
<br />
Great post, you go girl! I echo what Gene says, its a great group, i'm mum of a boy with PS so i can't help on the specifics but there are lots of women in the group who can. x

Im guessing you arent in the uk, but if you are, text? 07943858894

No I'm not. I'm from Connecticut.

JT, Come visit polandsyndromesupportUK on facebook. The women here are very supportive.