Poland Syndrome

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Poland Syndrome
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Megan Glosson

9 Facts About Poland Syndrome People Didn't Know Until They Were Diagnosed

Although my parents were informed of my Poland syndrome diagnosis during infancy, I have always been shocked by the lack of detail they received about the condition. All my mom knew was that the right side of my body was affected, and despite the noticeable deformities to the right side of my body, I’d live a mostly normal life. As I’ve grown up, however, I’ve learned that part of that lack of information had to do with the fact that the condition is so rare that most doctors barely even learn about it in medical school. Because of this, many people don’t learn about the finer details of this rare disorder (like the nine facts listed below) until they receive a diagnosis and research Poland syndrome on their own. 1. Poland syndrome is a congenital health condition. Whether they realize it or not, individuals with Poland syndrome are born with the condition. This makes it a congenital health condition. Upon delivering the baby, doctors often notice the abnormalities and complete the physical exam or other tests needed for diagnosis. However, some mild cases of Poland syndrome may not be evident until a child begins to experience growth spurts. In fact, some people don’t find out they have Poland syndrome until they reach puberty. 2. Poland syndrome can affect both muscle and bone development. The main commonality people with Poland syndrome have is missing or underdeveloped pectoral muscles. However, the condition can also affect other muscles and bones throughout the upper portion of the same side of the body where the pectoral muscles are missing or underdeveloped. This includes the chest and ribs, shoulders, arm, and hand. Personally, I have a mixture of muscles and bones that are underdeveloped and/or missing. 3. Poland syndrome occurs on a spectrum. The syndrome doesn’t have different forms, but rather occurs on a spectrum. Not everyone with Poland syndrome is affected to the same degree. Some people may only have a slightly underdeveloped pectoralis major muscle to the point that the condition is barely noticeable. Others may have a concave chest, shortened ribs, and short or underdeveloped fingers. 4. Poland syndrome is not an inherited or genetic condition. So far, no studies have found a genetic link to Poland syndrome, which makes doctors believe it occurs sporadically. However, there are reported cases of multiple family members living with Poland syndrome, including siblings whose parents do not seem to have the disorder. In my case, the disorder has impacted family members across multiple generations, although I was the only one in my generation to be born with it. 5. Poland syndrome affects the right side of the body in the majority of people with the condition. Despite all the variations that can occur with Poland syndrome, it seems to mostly occur on the right side of the body. In fact, an overwhelming 75 percent of people with Poland syndrome are right-side affected (myself included). 6. Sometimes, Poland syndrome can impact the spine. Although it’s rare, there are reported cases of individuals with spinal defects directly tied to Poland syndrome. Furthermore, studies over the past decade have found an often overlooked connection between Poland syndrome and thoracic scoliosis. This makes sense, yet the limited amount of research and information on Poland syndrome makes it hard for practitioners to always see these types of connections. 7. Poland syndrome can also affect organ development. In some rare cases, people with Poland syndrome also experience issues with their lungs and kidneys. The exact reason for this is not well known at this point, but there are enough reported cases that doctors will sometimes test kidney and lung function or perform additional labs when diagnosing Poland syndrome. 8. Treatment for Poland syndrome isn’t always necessary but can help. Some people with Poland syndrome can go on to live mostly normal lives without any surgical interventions needed. However, some children with mild cases (especially girls) find that plastic surgery and other corrective procedures can help them. Furthermore, children with more severe cases may benefit from surgery on their hand or arm to help correct some of the missing or underdeveloped components. Even if people don’t seek out surgery or treatment as a child, they may end up needing procedures later in life to improve breathing or quality of life. Others may find that as they age, they need to seek out specialists like occupational therapists or chiropractors to help with issues related to range of motion and chronic pain as a result of the disorder. It really just depends on the specific ways the disorder impacts the person. 9. The cause of Poland syndrome is not fully known. Unfortunately, Poland syndrome is rare enough that researchers haven’t dug into the disorder enough to find a definitive cause. However, enough research has been done during my lifetime to narrow down the potential cause of the disorder. At this time, there are a few different theories, all dealing with fetal development. Currently, the primary theory is that it is caused by a disruption of blood flow during the early stages of pregnancy. However, there have also been theories related to oxygen deprivation, and the fact that some families do see it recur makes a genetic component possible. Poland syndrome is rare and often unheard of even within the medical community. This often makes it hard for families to learn about it after diagnosis, let alone before. However, after nearly 35 years of living, I am very glad that I’ve learned as much as I have about this condition that impacts my everyday life.

Megan Glosson

Learning to Love My Body in a Swimsuit as a Woman With Poland Syndrome

As a woman who lives in a larger body, I already have a love-hate relationship with my appearance to say the least. However, when you add in the fact that I have Poland syndrome, it’s easy to see why swimsuit season is my least favorite time of year. It’s too much attention to all the parts of my body that I hate. I can’t remember the last time I felt comfortable in a swimsuit. In fact, I spent a large part of my 20s and early 30s avoiding swimsuit shopping altogether. Finding a swimsuit that fits my curves and doesn’t draw attention to my lopsided chest often feels like an impossible task, and it’s not one I usually have the energy for. But, last April, I started dating an incredible woman who, among other things, loves to spend time at the pool and the beach. Unlike many of my previous partners, she never once made me feel self-conscious or uncomfortable with my body, despite its deformities. She didn’t ask tons of questions or make jokes about my chest, she simply let me share in my own way and continued to show me time and time again that she loved me exactly the way I am. Yet when she suggested a date day at a local hotel with a water park, I panicked. What if she sees me in a swimsuit and no longer finds me attractive? What if people make comments or stare at us because of how I look? The pressure felt so overwhelming that I almost backed out on the date. However, I decided to push through the discomfort, and I’m glad I did because we had a great time. I spent the entire day in and out of the water, and I didn’t feel the least bit self-conscious. In fact, there were even moments when I felt good about myself (although that could have just been because my girlfriend kept complimenting me). It was a rare moment for me to feel completely comfortable in my body, and I was so grateful for it. Shortly after that day, my girlfriend had a surprise for me: a new, two-piece swimsuit. Again, my inner monologue ran wild. What makes you think you can pull that off with your disgusting body? That will not look good on you! Yet again, with my partner’s encouragement, I pushed through my fears and tried it on. Once again, I was surprised by how I felt in the swimsuit. It somehow fit in a way that was comfortable but didn’t make my chest look off. I also didn’t feel like the rest of my body looked bad in it. In fact, I actually felt attractive. Before I knew it, I was wearing this new swimsuit any chance I got. I would wear it to the pool at our apartment complex. I took it with me on weekend trips. I even wore it to two different water parks we visited in the past year. When I wear it, I don’t feel like people are staring at me, nor do I feel like it makes my Poland syndrome obvious. Instead, I just feel like a normal woman in a swimsuit, enjoying my time in the water. Who knew that an article of clothing that was once my nemesis would become something I loved to wear? I would have never guessed! This summer is in full swing, and once again my partner and I are spending lots of time in the water. But unlike previous years, I am not dreading the pool the way I once did. In fact, I’m having lots of fun. I do think I have a long way to go towards accepting my body. However, I feel like this simple swimsuit has done wonders for my self-esteem. It’s helped me really embrace my Poland syndrome and see it as a part of who I am instead of something that holds me back. I know that may sound small, but I think it’s something that many people with health conditions that impact their physical appearance struggle with. But, maybe if we all shared stories like this more often, we’d all see that beauty really does come in all shapes and sizes, and the journey towards that acceptance really does start within our own minds.

How Surgery for Poland Syndrome Helped My Body Confidence

I’m going to share with you all a very personal story that I haven’t shared with many people before. But I hope sharing it will help other people and bring recognition to a condition that many haven’t heard of. Growing up I knew my body wasn’t “normal.” When I hit puberty my breasts were an odd shape and size. My mum always said to me “all women’s breast are uneven, yours are nothing different.” But to me I felt they were different. My right breast was about two sizes smaller than my left and had a concave area at the top, but I just learned to live with it because all women’s breasts were different shapes and sizes. There were times I was teased for it. Never directly to my face; it was always behind my back or behind giggles and snide remarks. Particularly one pool party in year seven where we were all playing a game and I was joining in, until I noticed the attention was on my chest. I felt so uncomfortable I got out of the pool and promptly got changed. I tried to avoid swimming sports in high school, but I enjoyed swimming. My mum did buy me bathers that didn’t show my breasts as much, one had ruffles on the chest or pleating so when I got out of the water the bathers didn’t stick directly to my chest, so it wasn’t as obvious. I remember my mum making an appointment with a plastic surgeon with me, but after the first appointment we never went back again. It just cost way too much to be even thought about. Having grown up on a farm there were more important things to use the money on. My boyfriends would notice it when we first got intimate and I would have “the talk” with them about how “that’s just how I was.” I used tissues, toilet paper, shoulder pads or foam padding to fill the void in my bra. I could never wear low cut tops or bring myself to being topless in front of anyone. My cleavage just looked deformed from the concave effect in my chest. I was never someone for flings or one night stands as I was ashamed of my body, and the thought of having to explain that was just the way my body is, terrified me. Years down the track I was taken on as a BDSM submissive trainee. My trainer became curious about the reason my body was developed the way it was and did research online. One day she mentioned she thought it was something called Poland syndrome. Poland syndrome is described as: a birth defect characterized by an underdeveloped chest muscle and short webbed fingers on one side of the body. Short ribs, less fat and breast and nipple abnormalities may also occur on that side. Well, I had the breast abnormality, but not the short webbed fingers, and one side of my body was always muscularity smaller. Now I was armed with this information of what it could be I went in search of information. I started reading online all I could. I searched Facebook groups and came across a Poland syndrome support group. I actually made some connections with two lovely ladies who shared with me their knowledge and experiences of what they had gone through. I felt relieved that I wasn’t alone. One of the ladies suggested I speak to my doctor about getting a referral for reconstructive surgery with a surgeon she had used in Melbourne. She said she had hers done via Medicare and the only expense to her was if she required pain killers. Medicare would cover the costs due to it being reconstructive (medical) and not just cosmetic for looks. I had to wait four years on an elective surgery waiting listing through a public hospital until my name came up. By the time my name came up I was seeing a guy I had been with for two years, and he was supportive of me going ahead with the surgery. After meeting with the surgeon it was decided I was to get an implant in my right breast first, let that settle and then get a breast lift on my left. Although I was nervous about the operation I was also looking forward to it. The one thing I was looking forward to was about to happen. I was full of nerves and anxiety but it happened. After the surgery I wanted to get back into exercising, and I think I started back too early. The sweat which formed on my bra from exercising caused an infection. One which caused a hole where the stitches were and weren’t nice at all. I contacted the surgeon directly and voiced my concerns and asked me to come back for a check up. From there another surgery was arranged to cut the infection out and stitch it back up. This time I knew the importance of recovery time and allowing my body to heal. I tried so hard to let my body heal as it was meant to without worrying about getting back into exercise (as hard as that is). My scar is there however it isn’t visible unless I am upside down. Eighteen months later I get another phone call from the hospital. They were ready to do the breast lift on my left side. The night before was the whole no sleep, anxiety-riddled experience just like last time. The silly thing is we were on the way to the hospital and we received a call to say an emergency case came up and they had to cancel mine. Now I wasn’t upset about this. I was glad that my case could be rescheduled for someone who obviously needed my surgeons time more than I did. My surgery was then rescheduled for the following month. This time it wasn’t rescheduled and I was in and out if hospital over night. I currently have some great looking bruises on my breast and I’m hoping the scar will heal better than the one on my right side. Fingers crossed for no infections this time and I’m definitely not going to push my body back into exercise too quickly. Now I know my breasts won’t be exactly the same. The motto I have been using is “they are sisters, not twins.” But the first surgery did help me with body confidence. I’m hoping the second operation will only make it better. I look forward to wearing unpadded bras and feeling better in myself wearing the kind of cleavage showing clothes I have always liked or bathers without being worried about how it will cling to me when I get out of the water. To anyone out there who thinks they may have Poland syndrome please feel free to message me to talk about it. I am happy to point you in the right direction. Also anyone who would like to talk about breast implants or a breast lift, I have now had both so I would be happy to speak about this also.

Megan Glosson

The Dating Anxiety I Experience Because of Poland Syndrome

Dating creates anxiety-provoking moments for many of us. It doesn’t matter who you are or what challenges in life you face — there’s just something about putting yourself out there that feels more than a little terrifying. And, because we all know the first impression matters the most, we often stress over our physical appearance. As a woman born with Poland syndrome, though, there’s one part of my body that I worry about the most: my chest . In a culture where “sex sells,” a woman’s breasts seem to matter just as much as her smile. In fact, countless studies have tried to determine exactly why heterosexual men can’t keep their eyes off of women’s chests. While the jury is still out on why boobs are so fascinating, the fashion industry takes full advantage of this by selling clothing that helps women “flaunt what they got.” For someone like me, though, drawing attention to my breasts only accentuates the fact that one side of my chest is, for lack of a better term, deformed. Because of this, I go to extreme efforts to make my chest look acceptable to the general public. I agonize over bras. I specifically shop for clothing that either makes the difference between my breasts minimal or conceals it entirely. In fact, I often wear loose-fitting t-shirts or bulky sweatshirts because those are the only tops that make me feel less self-conscious. But that doesn’t work once you start dating someone, now does it? Sure, I can take tons of selfies that avoid showing my chest or even add extra padding to the right side of my bra. I can find other ways to cover up my under-developed side or try to stand in ways that make it less obvious. But at the end of the day it doesn’t matter what I wear or how hard I try to avoid it, because eventually the person I am dating will notice the extreme difference in the right side of my chest — and they will ask about it. With each of my exes, I tried to be honest and explain Poland syndrome to them without boring them to death. Some of them asked in-depth questions. Others broke up with me shortly after. One just turned it into a punchline every time we got physically intimate. I never knew which type of response I’d get until I told them, and it’s impossible to avoid the question or deny the issue when it’s literally staring them right in the face. No matter how they initially responded, though, I couldn’t help but feel like they each looked at me a little differently than they did before they knew my “secret.” Now that I find myself single again, I can’t help but worry about how much my Poland syndrome will impact my chances of finding love once more. Will the differences between each of my breasts be obvious in my dating profile pictures? Will potential partners just blow me off the minute I show up for a date with a slanted chest? How will I respond when the question inevitably comes up at the most inopportune time? Honestly, there are days when the thought of going through the whole discussion with someone new feels too overwhelming to even consider dating again. I hate explaining a rare and relatively unknown condition to someone, and I can’t stand the way they always look at me as they survey the disparaging difference between each of my breasts. Every time I show them the differences in my hands, my arms, and my chest, I feel myself grow less and less attractive in their eyes… and I’m so sick of it. But, at the same time, there’s a part of me that hopes that maybe, just maybe, this time will be different. Maybe if I put myself out there just one more time, I’ll finally find a partner who is willing to accept my flaws. Perhaps someone will still think I’m beautiful even when they discover that one side of my body is different from the other. Maybe, just maybe, I’ll finally find someone who cares about connection more than physical appearance. I know dating makes just about everyone anxious, and I even know there are lots of people who deal with similar fears as mine. But sometimes I just wish looking for love wasn’t so damn complicated, especially for people like me — people with Poland syndrome.

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Megan Glosson

How Living With a Rare Disability Can Improve Your Life

Being born with any medical condition or physical abnormality can be difficult for both the child and the parent. Being born with an incredibly rare condition like Poland syndrome, though, makes life even trickier to navigate at times. In over 30 years of life, my condition has given me some interesting experiences. I’ve baffled doctors who didn’t even know of the existence of my condition, let alone any details about how it may impact my daily life. I’ve fielded questions regarding my body structure and taken torment from people who found humor in my physical deformity and struggle. Although there are days where I curse my body and the circumstances that caused my peculiar development, my condition has actually enhanced my life in the most interesting ways. My health condition has taught me flexibility and adaptation. I’ve learned to work smarter, not harder, and accept that there are some things I just do differently than “typical people.” People laugh that I bowl left-handed or that I require minor adaptations to play certain musical instruments, but for me it’s just the way it is. I’ve learned that where there’s a will, there’s a way… even if my way looks a little goofy, at least it gets the job done. My physical differences have allowed me to develop understanding and empathy for others. I appreciate people as individuals and try my best to always ask how I can best assist them or provide for their unique circumstances. I know how it feels to be picked on or belittled for something you have no control over, and I pride myself on having a heart that loves no matter what. I try to be respectful and ask about preferences. I seek to know people for who they are, not what their medical records contain. My condition has taught me the importance of advocacy and fighting for equal rights. Everyone deserves equal access and fair treatment, regardless of their physical or mental capabilities. Some of us need clothing or other items built to fit our bodies; others need buildings that provide accessibility and features that allow for maximum flexibility to accommodate their disabilities. It’s important to break down the “one size fits all” mentality of society and reach new heights so that everyone feels equally invited to the table and represented in their daily affairs. Although I severely struggle with body image and self-love, my disabled body has provided me with valuable lessons that I truly believe have enhanced my life. Without my rare disease, there are many aspects of daily life for so many that I would have never even stopped to consider. I feel “awake” because of my condition. I see the world with my eyes wide open, and because of that increased awareness, I want each of us to help make the world a better place.

Megan Glosson

Bra Shopping Is Hard When You Have Poland Syndrome

“Hey, Mom, do you think maybe we could go shopping this weekend?” The silence between my question and her response seemed to never end. I stood there, awkwardly, hoping I could go through this conversation without having to relive the school day out loud. Just having the thoughts still lingering in my brain was enough to leave me somewhere between curling up in a ball sobbing or running out to the woods and screaming. Since I was a small child I’d been very aware of my Poland syndrome, a rare birth defect characterized by underdeveloped muscles and bones on one side of the body. I used to think it was a funny way to “stand out” from others by showing people my hands and watching them try to figure out how they were two different sizes. Puberty was causing a whole other form of attention that was much less enjoyable. All eyes were on my chest where a set of breasts, or rather one developed breast and one severely lacking “partner,” sat for everyone to openly mock. I naïvely believed having my mom take me shopping for a bra would help the stares and smirks and instantly make the slurs stop. Not only did the bullying continue, but the entire experience of shopping for undergarments left me feeling even more defeated. It was impossible to find anything that fit one side without looking ridiculous on the other. The sizing issues caused the underwire to hit me in places that hurt, and I fought back tears as my mother said, “Bug, nothing is going to be ‘right,’ you should know that by now.” Unfortunately, nearly 18 years later, I do still fight those tears and feelings of self-consciousness each time I step into a fitting room to purchase new brassieres. That initial experience will never leave my memory, but I have learned how to cope with my insecurity regarding my chest. I’ve discovered the styles that help “hide” the difference, and I’ve learned what types of clothing aids in making the size discrepancy less obvious as well. It’s quite tragic to think back and realize how vain and body-conscious everyone was in middle school. Nothing else about me mattered besides my body and its attractiveness to the opposite gender. Those years, and the “brassiere conundrum,” taught me to rise above the system that taught us beauty was only skin deep. I spent my high school years and beyond surrounding myself with people who saw me for more than my appearance and most especially, more than the difference of my body from Poland syndrome. I don’t wear makeup, I have no inhibitions of going to the store in my pajamas and I try to show my two daughters there’s so much more to life than being “a pretty face” or a “killer body.” The most important thing I believe we can all learn, whether we have a rare disease, chronic illness, disability, or mental illness is to find that way to embrace ourselves as we are. The world can always be adapted to fit our needs and unique situation, but we can never truly change who we are or take away our conditions. The more I learn to accept my body though, the easier it becomes to be comfortable with myself in those fitting rooms or even just walking down the street. Even the worst of times can teach us how to embrace ourselves and help us grow.