Lesli Roberts knew something was wrong when she hit puberty and the right side of her chest developed, but her left did not. "For a couple years my mom and doctor brushed it off, thinking the left side would eventually catch up," says the 24-year-old. "It never did."
She was eventually diagnosed with Poland's Syndrome, a rare condition that develops in utero and affects one side of the body. For women, that usually means that only one breast develops. Depending on how pronounced the condition is, it can also result in abnormal arm and chest muscles, and fingers that are short and/or webbed.
Dr. James H.W. Clarkson, a physician who specializes in reconstructive surgery, says the condition occurs twice as often on the right side of the body and affects more men than women. But because Poland's Syndrome usually means that only one breast develops in females, many women only discover they have it when they hit puberty. And this often has huge psychological ramifications.
"My right side didn't develop at all, causing tremendous insecurity as I entered adolescence," says Melissa Amaya, a 36-year-old author. "No one ever said anything, but I often felt like my lopsidedness was obvious to the world."
Unlike Lesli, Melissa was diagnosed as a child, and had surgery on her right hand to increase functionality. "I'm also missing my right pectoral," she explains. "My whole right side—arm and chest—is a bit weaker. As a young child I didn't pay much attention, but as I entered early teens it was evident to me."
Dr. Clarkson, whose English grandfather identified and named the syndrome in the 1960s, says the cause isn't known, but it's thought the condition is triggered by a random vascular injury or blood clot when the fetus is in the embryo stage. This results in a developmental defect on one side of the body. It is not thought to be genetic or inherited.
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The syndrome is relatively rare, affecting one in 30,000–100,000 births, which means adolescent girls with Poland's Syndrome are unlikely to have heard of it or met anyone with it, heightening their isolation and anxiety. "They may feel very self-conscious, and that people are going to tease them about it or make jokes," says Professor Diana Harcourt, a co-director at the Centre for Appearance Research at the University of the West of England in Bristol. "So they'll likely be very self-conscious in changing rooms where they feel their bodies will be on show."
According to Dr. Harcourt's research, appearance is one of the most significant factors when it comes to young people's self-esteem and identity. Looking different often means women will avoid drawing attention to themselves. "At that age," she says, "you're starting to be interested in other people in a romantic way, and with intimate relationships that's the very part of the body that can heighten anxieties or concerns."
"I'm currently on antidepressants for the anxiety caused by my breast issues."
Further, people with the condition are often bullied. "I would have to get out early from swimming so no one saw me," says Louise Knight, a 27-year-old from the UK. "One girl even followed me and was questioning me [when she saw me] washing my silicone prosthesis. The worst day was when the tissue I put in my bra fell out at P.E." Lesli had a similar experience. "I was picked on severely in middle school," she recalls. "Kids would harass me, call me horrible names, and even go so far as to grope me or look down my shirt."
Many women with Poland's Syndrome opt to undergo cosmetic surgery to insert a breast implant on the affected side. The three women who spoke to Broadly all underwent breast augmentation surgery.
"My surgery helped build my confidence throughout high school," says Lesli, who was 14 when she had the operation. "My birth defect wasn't obvious anymore, and I didn't have to tell anyone about it if I didn't want to. It was even better when I switched schools, because nobody knew about it at all. I feel much more comfortable wearing tank tops and bathing suits [now], though I still worry if someone will notice or say something about it."
However, like any operation, breast surgery can have complications and less-than-ideal results. Louise has now undergone three reconstructive breast surgeries, two with the wrong size implant and one with a muscle transfer and tissue expander. "I wish I'd never had it done," she says. "Every day I live in pain. When they wanted to do the surgery, I wasn't at an age where I was aware of what was really happening."
When Louise was a teenager, she had the tissue expander put in to stretch the skin on her chest. But 11 years later, she has hardening from scar tissue and a constantly sprained chest muscle (her back muscle was used to reconstruct her pec). She is currently trying to get the NHS to remove the expander and the muscle, and find a different way to reconstruct the breast. "But the NHS has now classed the surgery as cosmetic, and won't touch me," she explains. "I'm stuck being in pain my whole life and it's something that makes me very miserable. I'm currently on antidepressants for anxiety caused by my breast issues."
Melissa also had a breast implant on her affected side, and while she says her breasts are more symmetrical now, she still has an ache-like pain on her right side where her lat muscle should be—a result of its removal during her breast reconstruction surgery. Because she also had a breast lift on her unaffected side, to make her breasts more symmetrical, her ability to breastfeed was inhibited.
"All in all, knowing what I know now, I'm not sure I'd have the surgery," Melissa reflects. "I think I'd opt for some sort of prosthesis bra instead." For her, it's the "internal, emotional stuff" that's the hardest part about having Poland's Syndrome. "It's feeling 'not good enough' and feeling less than a 'whole woman' when the chest is impacted. Social insecurities due to handshakes and not knowing whether the person on the other side of the handshake is going to freak out or not due to the shape of my hand. What you see is truly just the tip of the iceberg of the totality of the struggle."
"I am forever grateful for the therapist I met with."
In college, Melissa saw a therapist for eight months, which helped her cope. "It was the first time I felt heard and understood," she says. "The first time I had said many things out loud and gave my permission to acknowledge the difficulties I faced.
"My family, although I know they loved me and did their best, did not do a good job of walking [through this] with me," she continues. "Their approach was more of a 'Let's not bring it up unless she brings it up' mentality, so all the angst was bottled up for 18 years. I am forever grateful for the therapist I met with."
Lesli also found therapy helpful. "It not only helped me come to terms with my defect and helped to improve my confidence, it also helped me uncover a lot of underlying mental health issues," she says. "All in all, it helped me a great deal."