A Maryland woman who underwent years of painful and controversial limb lengthening procedures has shared how life has changed for her 15 years later.
Chandler Crews, 31, was born with achondroplasia, the most common form of dwarfism.
The genetic condition, which stems from a mutation in the FGFR3 gene, slows bone growth in the cartilage of the growth plates. While people with achondroplasia usually grow to between 42 and 56 inches, Crews had reached her adult height of 3’10” by the time she was 16.
Growing up, Crews struggled with daily tasks like washing her hair, driving, and using public restrooms. She also suffered from complications of the condition, including bowed legs and frequent ear infections, while facing stares and unwanted comments about her size.
“I felt like I was never in my own body,” she wrote on her website, cited by Daily Mail. “I didn’t want to wait for the world to change to fit my needs; I wanted to take charge and change for myself and no one else.”
In 2010, at just 16, Crews underwent her first limb-lengthening surgery at the Rubin Institute for Advanced Orthopedics.
The procedure, which involves cutting bones and using devices to slowly pull them apart to stimulate new growth, is considered taboo in parts of the dwarfism community because of its risks and cost.
Over the next several years, the woman endured two additional leg surgeries and arm-lengthening procedures, with the total medical bill nearing $2 million. Insurance covered most of the costs because the operations were deemed medically necessary to correct her bowed legs and spine health.
The process was grueling. Crews recalled months of intense physical therapy, learning to walk again after her first surgery, and pushing through daily pain and setbacks. But ultimately, the surgeries changed her life: she grew nearly 13 inches, reaching 4’11”.
“Being able to just walk up to someone and communicate with my face in the same range as their face has been the biggest game changer for me,” she told Limblength.org. “My treatment at RIAO didn’t just change me physically, it changed everything for me.”
With longer arms, she says she can now tie her hair in a ponytail, sit further back from the steering wheel, and manage daily hygiene without assistance.
“At 4'11" I’m still really short, but I’m what I call (for myself) a ‘comfortable short,’” she added.
While some in the dwarfism community criticize limb lengthening as sending the wrong message, Crews insists it was the right decision for her.
“Our bodies are our own, and no one, even if you have the same diagnosis, should have any say in what you do or don’t do,” she penned.
Beyond her personal transformation, Crews has turned her experience into advocacy. She founded The Chandler Project, an organization dedicated to supporting people with achondroplasia and raising awareness of new research and treatment options.
“Children have died from complications of achondroplasia. Adults have died from having achondroplasia. No one ever wants to talk about it, but it’s true,” she said. “Living with achondroplasia is a difficult life, but it’s the only one I have. I’m working hard to make it my best life and show others they too can control the way they live with this condition.”
Today, Crews says she finally feels independent, and, most importantly, comfortable in her own body.