Poland syndrome Puns

Hello.

I just wanted to share this new Poland Syndrome registry site that was literally just launched a day or two ago.

My daughter was born on September 17th and was diagnosed with PS on October 28th. Her left hand seems to be fully formed but is smaller than her right and upon assessment from an upper extremity pediatric surgeon at CHOP, she is partially missing her left pec major muscle.

As all of you, I'm sure, are already aware, there is not a lot of information on Poland Syndrome. I found this wonderful group on Instagram, u/polandsyndromepipuk , which is where I saw they launched this registry site to try and gained more information. The more people that can sign up and share their experience the better so I wanted to post it here! :)

https://poland-syndrome.healthie.net/register

Hello everyone.

I see a lot of posts on here with a lot of hopeless and depressed people. I was you. I get it. I spent the first 20 years of my life depressed and certain I would not only never have sex, but would be alone for as long as I lived. I was certain that no one would ever find me sexy. I was certain that I should just kill myself. And I attempted suicide multiple times.

I just want to share with you all that it's all bullshit.

I have backpacked all over the world, working on the road (we don't come from money) with the love of my life. I run a business. I am an author of multiple scifi books. I now have a child. I am living the life I assumed with total and absolute certainty I would never have.

Here's a link to my Instagram as proof of having Poland Syndrome. I post many pictures of myself without my shirt on, something I would have never dreamed of when I was younger.

Instagram

Here's a link to the specific post where I share my story about overcoming my birth defect and body dysmorphia in general:

My story

Stop believing what your mind tells you. You are beautiful. You are worth it. And one day you WILL meet someone who sees you as beautiful and sexy.

The first time I told my now partner (been together 12 years, just had a baby 2.5 weeks ago, we just have no interest in marriage as we aren't religious) about my birth defect was the very first time I met her. We were out at a bar in both our last years of university. I was still a virgin, of course, while she was quite sexually experienced. She took my breath away. She was beautiful, funny, captivating in every way. But of course, I knew I could never be with her because I found myself disgusting and horrifying. With nothing to lose, I told her, "Want to see something crazy?" she nodded. I lifted my shirt and showed her my chest. "I only have one pec," I said, assuming she would turn away in disgust. She simply said, "hmmm, that's interesting." And we went on having an amazing conversation and went back to my apartment to make out. We've been together ever since, 12 years now, like I said.

Stop believing that voice in your head that tells you you are gross and deserve to be alone. It's bullshit. There are many people out there that will love you for you and not your mere physical traits. There are even people out there that will find your body, just how it is, sexy!

Have confidence in your

I have family in Poland that I want to visit. I receive weekly saline infusions for POTS. My babcia asked her cardiologist and he said he never heard of POTS (she gave him the proper Polish name) and that saline isn’t used for “that” anyway (saline not used for low blood volume?! Shocker...). We don’t want to risk not having my saline infusions there as it has been very helpful for my POTS. My family is in Płock.

Also, I take A LOT of medications, some of them controlled, so any info about who I need to contact would be good. Thanks!

Hey all, I am currently planning to join the British army when I leave school but I have been doing some research about my ps(I am missing or have a underdeveloped muscle below my left pec) and it says that they wouldn't let me in however I am fit and healthy and it only effects me by the way my chest looks.

Hi all! Question for women out there with Poland’s Syndrome: has anyone had success/experience with breastfeeding on their affected side? This is an odd question but I’ve never gotten an answer from a doctor, and as I am planning to have kids one day I’d like to know what to expect. Thanks!

Hey there. So I just had my first baby last June and at her six month appointment last month she was diagnosed with Poland syndrome which affects her right breast. I noticed something was off when she was first born but I assumed the unaffected side was just swollen from hormones. Alas, I was wrong.

After reading through some of the posts, I feel extremely fortunate that her pediatrician was familiar with it and was able to diagnose it now rather than discovering it once she’s in the throes of puberty.

Obviously she’s my daughter and I would love her whether she had one boob or five boobs. But my heart aches so bad already for what I know she’s gonna be going through in a decade or so. Life is hard enough as it is when you don’t have a rare disorder that causes physical abnormalities 😓

Breastfeeding was (and is) huge for me and the idea of her not being able to breastfeed was super upsetting but I’ve read several accounts on this sub of women breastfeeding even on their affected side and that is a huge relief to hear.

It is my intention to save up enough money for her to get the surgery when she’s older if she chooses. Regardless of any surgery though, I want her to love herself and embrace her differences.

So if anyone has any advice, stories, etc. for the parent of a daughter with Poland syndrome, I’d love all I can get. What can I do to make her life easier? I’m really grateful that I at least get to be somewhat prepared for what this syndrome is going to at throw us. And I’m also really grateful that this subreddit exists - my spirits have been lifted.

I really appreciate all that’s already been shared here and thank you in advance for any comments I get.

Just curious of the different outcomes for P.S. P.S. effects my left side. Missing complete pec, breast tissue, underdeveloped nipple. Less muscle in upper arm as well. Just ribcage with skin:( I have had the Lat. Flap surgery with a silicone implant. Still not the best but getting closer.

Hey 👋🏻 Have you ever experienced or know someone who has experienced recurring stomach pain on the side affected by Poland’s? My bf has Poland’s and he’s been dealing with these pains since forever. All the bloodwork, scans, colonoscopy came back clear and the doctors were like nah he’s fine. But well, apparently something’s going on. I can’t remember a day without at least one episode. It’s on the right side, somewhere around the navel, sometimes migrates under the ribs. Seems to subside for some time after a bigger meal, fiber-rich foods, rice, etc., but comes back after some time. I’m completely puzzled, because if it were something life-threatening, we’d know by know - either from the screenings or his condition would simply get worse. I read on wiki that people with Poland’s can suffer from gastrointestinal tract abnormalities and to me it seems like it may be connected. Especially so the pain subsides when his stomach is filled with foods that suck up a lot of liquid and stay there for long as if it stretching the bowel somehow helped? (Forgive me, I’m on my wit’s end because of this situation 😂) I couldn’t find literally ANY story about someone with Poland’s having such an issue, so I turn to you - someone, something? Did you hear about stuff like this? Do you know a doctor who could help?

Cheers

Poland's syndrome is a type of birth defect (I think) that causes a side of the upper-body to be under-developed. Another side effect is webbed fingers but I was lucky. The defect is 1 in 20,000. It is in my dominant side, the right.

I am just wondering if there are people in a similar situation, if so what's up? How is it affecting you?

Not sure if I’ve seen anyone else online with both!

Wondering if anyone had any information (or could link a good source) for this? From general research I don’t think it has a strong genetic component in terms of passing along to potential children but couldn’t find too much information.

I am a 24 year old woman who was born with pretty mild Poland's Syndrome. I am completely missing my left pectoralis major and part of my latissimus dorsi and have never grown a left breast at all. Over my life there has been a lot of questions I've been asked about it (usually can I touch it) and since I've met many people who have this problem but are too ashamed to ask about it, I'm hoping this may help someone.

I do have three children and several other (unrelated) health problems and I'm pretty open about this issue. Although I currently do have "two" breasts one is 100% real, the other is 100% silicon. As my husband says, "The best of both worlds."

(And this is my first post ever, so if I'm doing anything wrong, I apologize. Also, I do anticipate "proof" photo questions and don't mind some of me in a shirt, but for any other ones of me IRL I would need to ask my husband's permission before I do.)

EDIT: I tried some webcam photos. Hope this works http://imgur.com/a/zbgsk

Poland syndrome is a disorder in which affected individuals are born with missing or underdeveloped muscles on one side of the body (mine is on the right).

So I am a 16-year-old male and for the first time in my life, I am actually kind of worried about the syndrome I have. I've known for years I am missing a part of my right chest muscle but never actually cared. I actually have been kind of a nerd/geek until now pretending I did not care about how I look, always had kind of a messy style and focused more on school. I was a straight-A student but did not go out much, had no actual friends but some people I hang out with a bit.

This year I decided I am going to be different, I wanted to be a chill person, I decided I wanted to care more about my looks and I wanted to focus on talking to people and making more friends. All of this has been going great for the most part. I am actually talking to a girl I think I have a crush on and I am pretty sure she likes me back. I look better than I ever had in my life (even started working out during the summer) and socially again, for the most part, I am going great.

My marks though have been dropping sort of. Its still kind of early on the year but I have written two physics tests (which is the subject I hopefully want to have a career with, either that or chemistry) and I got a 13.8/20 and a 13/20 as opposed to the 20/20 I was getting last year. The people I used to hang out with (now my friends), from being decent students they actually started going up and improved while I just did the opposite which makes me feel very bad. It makes me think that maybe I am not going to do what I want to for a living when I grow up, that I will fail. It keeps hurting me that I did bad on two tests in a row but everything else is going great.

I used to be a very shy kid, I am really not anymore, used to be quiet, maintained that a bit, not so much. Other than my Poland syndrome which will come up later I am looking pretty good. People really like me, they invite me to stuff and talk to me freely.

About my marks, I plan to start studying seriously again, no joking around but I am not planning on quitting the rest of the life I am having because it is really making me happy. I just need someone to tell me how bad the scores I wrote are going to affect my life (because not only physics is what I want to do with my life, it's my favorite lesson with my favorite teacher which I disappointed), is any of it fixable and if I will be

Hello! I was born without a pectoral muscle on my right side, and my entire right half is slightly smaller than my left, albeit not very noticeably. It has limited my ability to play many sports due to the potential for a painful shoulder dislocation.

Also, I'm diagnosed to be mildly Autistic, so if you have a question about that it's okay too.

I will post a pic for proof later if it's desired, but can't atm because I'm not at home.

I have a meeting to go to in about 20 minutes so will start answering once that's over.

Edit: As requested, here's a picture. It's a pretty significant difference. http://i.imgur.com/GBrDhuB.jpg

Edit 2: it's 2315 Eastern Time, so I'm tired and will answer more questions in the morning if there are any.

Edit 2.5: I'm back at 0740 ET, and will answer more questions throughout the day as they come up.

Edit 3: Here is another picture showing my tendon. This made the swim unit in gym pretty fun. http://i.imgur.com/6lRA1AV.jpg

Hi doctors of reddit ! this is my first time posting in this subreddit. I have poland syndrome and i have few questions about it. Does poland syndrome only causes no / less muscles on the chest area or can it affect other parts of the body? Poland syndrome affects the left side of my body but i don't know if it affects other parts of my body. The reason i'm asking this is to know is it possible for it to affect the face ? For as long as i can remember, i can never uhh, "move" the left side of my face thus was never able to smile. When i asked my dad about it, he just laughed it off and said i just forgot how to move it. It sounds kinda stupid to forget how to move your muscle. Can anyone provide some explaination ?

ps : thanks u/DiggyBun for telling me about this subreddit. Never knew it existed

I know this goes out of my 1 post per week thing but I needed to talk about this while I still remember to, I have Poland Syndrome, my form is the absence of my right chest muscle, will this affect me getting trained and hired?

And just a second question, do I need a different school for DoD ARFF or still state fire academy?

Poland syndrome means that my left hand is significantly smaller, and i'm missing my left pectoral muscle. (Electric bassist)

Hi doctors of reddit ! this is my first time posting in this subreddit. I have poland syndrome and i have few questions about it. Does poland syndrome only causes no / less muscles on the chest area or can it affect other parts of the body? Poland syndrome affects the left side of my body but i don't know if it affects other parts of my body. The reason i'm asking this is to know is it possible for it to affect the face ? For as long as i can remember, i can never uhh, "move" the left side of my face thus was never able to smile. When i asked my dad about it, he just laughed it off and said i just forgot how to move it. It sounds kinda stupid to forget how to move your muscle. Can anyone provide some explaination ?