ICLL Patient Story

Chandler, a patient with achondroplasia–a form of dwarfism, started her lengthening treatments at the International Center for Limb Lengthening at the age of 16. She started at her mature height of 3’10” and now is over 4’11, and she gained 4 inches of arm length.

She shares, “Before coming to RIAO (Rubin Institute for Advanced Orthopedics), I always knew that limb lengthening was an option for me. However, I always pushed it off every year until finally I made the choice one summer to have it done. I was 16 years old and tired of physically struggling through daily tasks. My concerns were that it was going to be a long process and I would miss out on so much of life. Looking back, 7 months out of life is nothing compared to a lifetime of the life you want and worked hard for.”

When asked how her life has improved since receiving treatment at the International Center for Limb Lengthening, Chandler shares, “Besides my health, everything in my life has improved…. I was only 3’10” and 16 years old when I had my first surgery at RIAO. I was already at my full grown adult height for someone with achondroplasia. When standing next to most of my peers, my face was at the height of their hips. Being able to just do simple everyday things was a struggle for me—using public restrooms independently, driving a car, walking city blocks, washing my hair. But the one thing that stands out the most is being able to have face-to-face communication with people now. It’s something I never even thought about until it happened. My surgeries took me from 3’10 to 4’11-3/4”. I’m almost 5 feet now and over a foot taller! 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. My treatment at RIAO didn’t just change me physically, it changed everything for me.”

When asked to share more about her experience with her doctor and the Rubin Institute staff, Chandler answers, “It was by pure luck that I found out about Dr. Standard after seeing him in a TV news special…. Dr. Standard is the first doctor to ever come in and talk to me and not just talk about me to my parents. I hear it from the parents of young kids as well; he makes sure that every patient at any age knows what’s going on and lets them be in control of their treatment.”

She continues, “Dr. Standard has great compassion and has never left me with unanswered questions or doubts. One of the first things he ever told me before I had my very first surgery was, ‘It’s easy for me to get the credit because it’s my name, but it’s the physical therapists that deserve the credit. You’re going to have to work with them and build a connection. You will see them every day, and they will know more about you than I will. If you can’t work with them, then this is going to be really hard.’ I will always remember this, and it’s so true. I have had the luxury of working with all of the physical therapists at RIAO, and they’re all so incredible at their job. However, it’s no secret that Kym Doll “Miss Kym” is who I prefer and who I work the best with. She has gone above and beyond for me. She always knew when I was having an off day and always reassured me whenever my measurements weren’t the best that it was normal and to be expected. She knew I would want the best (and how much of a perfectionist I was).”

When asked what she would tell someone who had achondroplasia and was considering treatment at the Rubin Institute, Chandler responds, “‘Go to RIAO and meet the team. Trust me.’ Limb lengthening is actually pretty controversial in the dwarfism community and I have people ask me often why I chose to have my surgeries at RIAO and not another center or closer to home. I always say just visit and meet the team and see how you feel. This type of surgery is only performed at a few centers in the world. It’s a big commitment for the patient and their family. It’s hard work, and it’s important to be 100% comfortable with your medical team because you’ll be working together with them to get the best results.”

For more of Chandler’s story, you can read this “Baltimore Sun” article about her lengthening experience. She also shares her treatment journey and resources for people living with achondroplasia on her Facebook page Facebook.com/ChandlerInBaltimore.