Visit Jani’s Instagram account and you will find post after post about body positivity and affirmations that all bodies are beautiful in their own unique way. Her openness sparks comments from people around the world, but this self-confidence didn’t happen overnight.
Twenty years ago when Jani was 9, she was diagnosed with an aggressive form of osteosarcoma in her right leg that had already spread to her knee. After discussing with her oncologist and surgeon, her parents decided on a rotationplasty, a type of surgery in which the middle part of the leg is amputated (along with the tumor), and the lower leg is reattached at the thigh and rotated 180 degrees. The ankle joint then functions as a knee joint.
This surgery is often used on younger children with osteosarcoma because it allows their bones to continue to grow with them. It also prevents them from having to undergo follow-up surgeries to adjust the knee to the height of the other leg. Many patients, like Jani, go on to wear a prosthesis that attaches to the leg, allowing for greater range of motion and adaptability.
For Jani, getting used to her rotationplasty wasn’t easy, especially in the beginning. She remembers waking up after the surgery feeling scared and unsure of her new leg.
“It was really strange — you’re not used to seeing your leg this way — so it took some time to get used to,” she says.
For years, accepting her new leg was a real challenge. Jani wore long skirts and pants to hide her artificial leg. At that time, rotationplasty surgery had only been done on about 100 people in her native Germany.
“I was really self-conscious because I looked so different from everyone else in my village,” she says, “and, being in the countryside, I really stuck out. I definitely didn’t have the self-confidence I do now.”
Discovery & Inspiration
In 2013, Jani took a job in the United States, working as an au pair for a year. Living in America prompted her to look at her body differently.
“It was the first time I saw other people with leg amputations like me,” says Jani. “And not only that but they were playing all kinds of sports. You could tell they were living their life to the fullest and I thought, ‘I want that kind of life, too.’”
Their positivity was contagious, and Jani wanted the freedom to fully appreciate and embrace her body and not let other peoples’ opinions hold her back from achieving her goals. It was also around the time that she joined Instagram, which opened up a whole new door of discovery and inspiration.
Now, Jani is an advocate for body empowerment and disability awareness. She speaks about her hardships and her experience, posting regularly to Instagram and YouTube. Her practical video reviews of different prostheses for rotationplasty have garnered thousands of views.
Whether a post to share how she’s feeling, an instructional video on how to modify certain exercises or how to comfortably sit on the ground with an artificial leg, Jani gives people an inside look at her life. It is important work that gives her a sense of purpose.
“My goal is to raise awareness, because I think that’s still missing,” says Jani, who connects with other osteosarcoma survivors who have had rotationplasty as well as mothers of rotationplasty patients. “I contribute videos and share my experience because I know how it feels to be on your own and alone. I try to give them help and support. For me, it’s those small things that make a difference.”
Read more stories like Jani’s in The Frontline, OSI’s monthly newsletter. Click here to subscribe.