Grace Rowberry – Poland Syndrome

Grace and determination

Grace Rowberry, 23, is a trainee veterinary nurse who lives in rural Worcestershire. She was diagnosed with Poland Syndrome, a condition that results in under-development of the chest on one side of the body, at just two months old and has five missing ribs on her left-hand side. Her pectoral muscle is also missing on that side, and her left breast did not develop.

Everyone knows how important it is for children to feel that they fit in with their peers, and Grace had a difficult time throughout her school years. The bullying started at primary school and, she says, the teachers did little to help: “Even when you are younger, children of the same age torment you and those people follow you to high school. They then recruit others and the group just becomes bigger."

“They would corner me in the PE changing rooms and call me names, telling me I’d never get a boyfriend, saying I was ‘deformed’ – and sometimes worse. They’d follow me home and continue taunting me. It was relentless. You feel very small and intimidated when it’s just you against such a big group.”

Grace tried to focus on her life outside school in order to cope with all the negativity. “I had ponies and horses at home and I felt I always had that to look forward to every day.” Her friends were very supportive, however the effect on her self-esteem was devastating: “I have always covered up, never worn revealing clothes. When other girls had swimming parties I wouldn’t go. I was always worried what everyone would think or say. Even now, I wonder what people are going to think about how I look.”

Finding her way

Despite the trauma of constant bullying, there was one person on whom Grace could always rely: her father. “My lovely dad brought me up single-handedly with support from my amazing family and he has been absolutely wonderful throughout the whole of my life when it comes to my Poland Syndrome,” she says. “He has taken me bra shopping, made sure my prosthetics fitted properly, taken me to all of my appointments, helped me with everything a girl needs. He has just all-round been my absolute rock.”

To help give her a more even appearance, Grace used Amoena breast prostheses from the age of 10. “At that young age, just a small breast form meant I was able to look a little bit more like the other girls. The lady from Amoena who helped me at my local hospital was an absolute godsend because I was going through such a tough time. I’ve stuck with Amoena products all the way through.”

By the time she was around 14, Grace started to feel more confident: “At least the prosthesis looked like a real breast from the outside, so I wasn’t picked on so much.” She recently started wearing an Amoena Contact breast form, which adheres directly to her chest wall: “Contact is really good,” she says. “It’s definitely my go-to now.”

Like nothing before

Grace is now determined to raise awareness of Poland Syndrome. “I firmly believe something should be provided to support adults with Poland Syndrome – even if it’s just to have a check-up to make sure nothing is wrong. That’s why I am keen to share my story.”

While there’s a sad lack of resources online, Grace recently discovered PIP UK, a charity dedicated to raising awareness of the condition. Inspired by their shared mission, she agreed to collaborate with them on a fashion show that took place in March 2024. “We worked with designer Lilly Alfonso, who made the clothes for the show. All the models were women who have Poland Syndrome, and we were on the catwalk wearing these wonderful creations. It was so exciting because there has never been anything like this before, for people who look like us.”

Grace hopes that the show helped educate and inform more people about the condition. “I want to keep putting my story out there,” says Grace. “I’m not the most confident person, but I want people to see what Poland Syndrome looks like. There will be young children today who are like me and this will help them see that they are normal, and it’s OK to be different.”

Grace is clearly passionate about spreading the word: “I would just like to let everyone know that even though Poland Syndrome is a rare condition – even GPs have to Google it – there are people out there who have it. If any ladies reading this have noticed that they are different, thank goodness there are organisations like Amoena and PIP UK they can reach out to.”

Find out more about PIP.UK here.

Photos: Grace modelling at the PIP Fashion Show and with her fiancé Max, who she says has been an amazing support to her.