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THE NEXT GENERATION: Evolving with the Help of Peer Networking

By Lobna Abdllatif

Ken KojiKen Kojis, a 22-year-old below-the-knee amputee from Milwaukee Wisconsin, lost his leg on April 15, 2021, to a construction accident near his house. Since then, he has faced many challenges, but this does not deter him from pursuing his interests in photography, videography, and riding his one-wheeler board. He has good and bad days, like everyone else, and manages to power through the bad days and show up where it matters.

At the beginning of his limb loss, Ken was introduced to the Amputee Coalition by his doctors who later connected him with an amazing peer visitor named Sean Fizer, a below-the-knee amputee for nearly 20 years. Sean drastically changed Ken’s perspective about what to expect as a below-the-knee amputee and seeing him gave Ken hope for better things to look forward to on his journey.

Sean told Ken about Amputee Coalition’s National Conference and how people with limb loss and/or limb difference attends as well as clinicians, prosthetists, and exhibiting companies with their technology. Ken became intrigued and desired to find out as much as possible, so he attended the 2021 virtual annual conference. His experience piqued his interest to attend the event in person, so he registered for the 2022 National Conference in Palm Desert, California.

Ken is one of several people who has experienced targeted muscle reinvention (TMR), which redirects the nerves into the thigh. He shared the benefits of TMR and pain management with others at last year’s virtual conference, and made new friends during a conference breakout session, two of whom he stays in contact with often. He also connected with Leslie Greene, one of his favorite speakers during the virtual event, who spent extra time talking with him and his mother to provide helpful information.

Leslie expressed care and concern at a time when Ken was scared about his future because he did not know how his limb loss would change his life. Ever since, Ken has attended Leslie’s virtual support group calls and looks forward to seeing her in person at this year’s conference.

When Ken attends the 2022 National Conference, his primary focus is to network with others living with limb loss and limb difference and peers his age who share similar experiences. “I am going to the National Conference in California, August 10–13, and I recommend others to attend because you realize that you are not alone when you connect with people and ask questions face to face.”

Lera DoederleinLera Doederlein has attended Amputee Coalition’s National Conference since 2019. She was introduced to the Amputee Coalition by her clinician, who told her about Youth Camp and National Conference. She values being able to gain insights from clinicians and other amputees at conference that would have taken her a long time to discover on her own, such as how to care for her prosthesis and skin. She enjoys meeting others who share her experiences.

Lera’s limb loss journey started in June 2017 when she experienced double above-the-knee amputations due to arthrogryposis multiplex congenita, a disability she had from birth that affected both her legs and hips. The illness prevented Lera from walking upright unless she wore orthotics or used crutches.

After a few surgical complications when she was younger, Lera made the decision to double amputate at age 14. Ever since, she has never regretted her decision. During her prosthesis fittings she was introduced to someone who played sled hockey who invited her to try out the sport. Much to Lera’s surprise, she fell in love with the sport and realized there are a lot of possibilities for her in adaptive sports.

Attending National Conference has helped Lera to gain a better understanding of her new lifestyle and grow her connections. She enjoys participating in breakout groups where she can hear personal stories from other attendees and appreciates how everyone is different and yet similar. She learns more about the latest prostheses and technology by talking with exhibitors and sponsors.

Lera recommends young people to experience the largest event for people with limb loss and/or limb difference, “It’s wonderful to network with others who can understand your journey.”