Canadian influencer Allison Lang opens up about growing up with fibular hemimelia: 'I still have flashbacks to the pain'

Born with a rare condition, Allison Lang faced unimaginable pain as a child. The Canadian influencer and athlete opened up about her lifelong battle with fibular hemimelia, a condition that led to the amputation of part of her leg when she was just a few months old.

In an Instagram post on Monday, Lang said "the surgeries were the hardest part" as she was growing up with the condition, adding she still gets "flashbacks to the pain" she experienced as a child, for more than a decade.

What is fibular hemimelia?

Fibular hemimelia is a rare congenital condition where part or all of the fibula, the smaller of the two bones in the lower leg, is missing. This birth defect can lead to differences in leg length as well as deformities in the foot and knee, which might require corrective surgeries or, like in Lang's case, amputation.

The condition is estimated to occur in about one in 40,000 births globally, but we don't know what causes it. "Scientists and doctors don't know exactly why babies are born with fibular hemimelia," KidsHealth explained. "But they do know that nothing a mom does during pregnancy causes the problem. Parents can't stop it from happening, but they can help kids get the best care."

From a very young age, the Montrealer was thrown into medical interventions. "After birth, the next 12 years of my life consisted of me having to undergo revision surgeries," she revealed to her followers. Each growth spurt brought intense pain as her bone outpaced her skin.

"As I would grow taller, the bone in the lower part of my leg would also grow, but my skin wouldn’t expand with it, causing the bone to start piercing through the skin. To this day, this is still the most painful thing I've ever experienced in my life," Lang said.

She'd also be sick for a week after anesthesia, she'd have to get fitted for a new prosthetic leg and go to rehab for weeks to re-learn how to walk and build her strength.

The physical pain was just one aspect of her struggle. She also faced relentless bullying upon her returns to school, with peers labeling her "a freak." This, combined with the isolation from frequent hospital stays and having to use crutches made it difficult to make friends.

The turning point in her journey came when the surgeries finally stopped with the end of her growth spurts. That's when new problems came around: accepting her identity.

"I decided to hide my leg because of all that I went through, thinking I could make up for lost time. When in reality I just shoved my struggles aside and stopped living authentically as myself," she wrote. "I hated being identified as disabled."

Today, Allison uses her platform to challenge the stigma around disabilities. "The reason I share my story and have become an advocate for those with disabilities is because I got so fed up with the discrimination, the isolation, the lack of resources," she shared on Instagram.

Her advocacy has not gone unnoticed as followers and fellow amputees have rallied around her. "You are such an incredible advocate, Allison! Keep sharing. Your story helps so many amputees on similar journeys," The War Amps commented on her May 13 post.

Another follower shared, "This really resonated with me, and it made me emotional because my story is really similar... Thanks for representing us!"

Late last year, Lang admitted that 2023 was a difficult year for her as she faced insecurities with her body image. She encouraged her followers not to compare their lives to what they see on social media. "Remember, social media is a highlight reel. Someone's life can look great in a 2023 recap while also looking like this at the same time," Lang penned in an Instagram post.

In the caption, Lang said 2023 was one of the "toughest" years she's had in a "long" time, detailing months of immobility, clashes with the healthcare system, business setbacks, intense migraines, burnout, physiotherapy, personal loss and "the peek of my body-image insecurities."

For 2024, one of Lang's goals was to focus on her mental health after she began seeing a therapist. She assured her followers "it's OK to go through these things," and that "there's always a lot going on behind the scenes too."

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