Chandler Crews’ Journey with Achondroplasia
Chandler Crews had long realized she didn’t want to spend her adulthood being under four feet tall.
This 31-year-old from Maryland was born with achondroplasia, a genetic disorder that typically results in shorter stature, characterized by short limbs, a normal-sized trunk, and an enlarged head with a pronounced forehead.
The condition arises from a mutation in the FGFR3 gene, which slows down bone growth, especially in the arms and legs. Though it’s the most prevalent form of dwarfism, fewer than 50,000 individuals in the U.S. have achondroplasia. Most cases, like Crews’s, are diagnosed shortly after birth, but some may not receive a diagnosis until later childhood when growth doesn’t align with expectations.
Crews, unlike her parents and two siblings, who are of average height, inherited this condition due to a mutation that happened at conception, affecting about 80 percent of children with achondroplasia.
Reflecting on her childhood, Crews mentions the challenges she faced growing up. Her mother often worried about her health because achondroplasia can lead to severe issues, including sudden death syndrome related to brainstem compression and serious respiratory problems like sleep apnea. Frequent visits to various specialists were a routine part of her early life due to complications associated with her condition such as bowed legs, spinal curvature, hearing loss, and ear infections.
Additionally, Crews recalls feeling like a “show dog,” as people would often come up to her, pat her head, and give what she perceived as insincere compliments, leaving her confused and frustrated.
When she turned 16 and came to grips with her height, she chose to undergo limb lengthening surgery—an often controversial decision in the dwarfism community. This procedure, while painful and risky, was something she felt necessary for her personal well-being.
On her website, Crews expressed, “I felt like I was never in my own body.” She wanted to take control of her life rather than wait for society to adapt to her needs. She acknowledged that some in the dwarfism community might view her choice as a slight against others with similar conditions, but she firmly believes that everyone should have autonomy over their bodies.
Her first limb-lengthening surgery took place in August 2010, when she was just 16. This involved surgically cutting the thigh or shin bone and using a device to gradually pull the bone segments apart over time—usually about one millimeter each day during the “distraction phase.” After the desired length was achieved, the device would be removed, allowing the bones to fuse and regain full function.
While exact statistics on limb lengthening procedures performed annually in the U.S. are not readily available, the surgery is increasingly sought for both medical and cosmetic reasons. The expense can be significant, with Crews estimating her operations to be close to $2 million. Fortunately, insurance covered most of her surgeries, as they were deemed necessary for her health.
Bowed legs, a term for the outward curving of knees, can lead to chronic pain and mobility issues if untreated, making her surgeries relevant for improving her quality of life.
Describing her experience as marked by “months of twists and turns” involves not just the surgical pain but also a rigorous rehabilitation process. Following her first operation, Crews attended personal training sessions and performed daily exercises. By the time her fixators were removed in April 2011, she faced a brand-new challenge: relearning how to walk.
Her journey continued with further procedures, including the lengthening of her arms for better proportion. She emphasized how important this was for daily tasks, from driving to reaching everyday items.
She received her arm lengthening in January 2012, gaining an additional four inches, which significantly enhanced her functionality. After a couple more leg-lengthening surgeries, Crews now stands at just over 4’11”. While she acknowledges that she is still considered short, she describes herself as “comfortably short.”
Now living independently and experiencing less pain, Crews has established a patient advocacy group called The Chandler Project (TCP) to provide support and awareness for those with achondroplasia.
She concludes her story by expressing the universal desire to feel “normal,” a term she acknowledges is complicated within the dwarfism community. Maintaining that she is simply Chandler, living with achondroplasia, she reflects on the gravity of her condition and the challenges inherent in it. Yet she is determined to control her narrative and inspire others facing similar hurdles.
