Like many with dwarfism, I surprised my parents when I was born. Only one in 15,000 to one in 40,000 live births results in a person with achondroplasia, the most common form of dwarfism.
Despite my genetic condition, I was a healthy baby and child. I attended a normal school and took dance lessons for 13 years. Like any other kid, I played outside, went to birthday parties and occasionally fought with my older brother and sister. In elementary school, I was shorter than my friends, but I always assumed I’d grow taller and be more independent despite my dwarfism.
Middle school years are rough for everyone. Bodies and voices change and, suddenly, everyone seems to only socialize with one group of friends. During this time, I started to realize how my small stature made me stand out (or lack thereof) from everyone else. My friends towered over me and walking together would force me to take twice as many steps to try to keep up. Simple tasks that most people take for granted, like washing their hands, required me to first find a step stool and then stretch for the faucet.
It was frustrating to realize that I would never grow as tall as I saw myself in my head. The world is not built for people who stand 3’10”.
Sweet Sixteen: The Gift of Major Surgery
Starting at a young age my parents and doctors spoke openly with me about the option of undergoing limb lengthening surgery to attempt to increase my height. For years, I wasn’t ready to consider it because there was always a dance recital or some future event that made the procedure and very long recovery time inconvenient. Further, in the dwarfism community, the procedure remains controversial.
But when I turned 16 and began yearning for more independence, I made the decision to undergo a procedure that would require cutting the bones in my legs. In the summer of 2010, I traveled to Baltimore, MD for orthopedic surgery to correct my genu varum (bowed legs), a very common condition associated with achondroplasia. Following surgery, I spent months in challenging rehabilitation which included 3-4 hours a day of physical therapy, 1,100 miles away from home in Little Rock. During that time, I grew six inches.
From Little to More
Beyond growing taller, I also grew up. While I was in Baltimore I was in control. I realize now that control was something I lacked before my procedures. In Baltimore, I didn’t feel underestimated. I was spoken to and treated as a young adult. In hindsight, I realize that I lacked control in what I could and couldn’t do – from physical tasks to how people would see me. I was given less responsibility because people treated me younger than my age, due to my height. This newfound control allowed me to mature and advocate for myself better and take control of my life.
While gaining six inches in height was a revelation it still didn’t allow me to access counter tops, drive a car, or even reach into the refrigerator easily. So, I opted for an arm lengthening surgery followed by a second leg lengthening.
Today, I am 4’11” and feel that my mind and body are together as one. It’s amazing all that I can do with straight legs and more height. The experience has been transformative and allowed for an independence I had been wanting all of my life. The decision to go through this procedure is a deeply personal choice, a choice that is debated in the dwarfism community, but still a choice that needs to be respected and decided on by the individual, his or her family, and doctors.
I’m considered one of the lucky ones in my experience with achondroplasia. Aside from some minor complications, I haven’t experienced any of the serious complications that are associated with achondroplasia. People with achondroplasia are at risk for serious complications as they age. While our skeletal system is smaller than average, our organs grow normally. This can lead, in some cases, to interruption of breathing, recurrent ear infections, a narrowing of the spinal canal that can compress the upper part of the spinal cord (spinal stenosis) and a buildup of fluid in the brain. These complications can require serious interventions to correct in children and in adults. Though rare, there is also a risk for paralysis and breathing difficulties in those who have an abnormal structure of the skull and vertebrae causing compression of the spinal cord.
A person living with a genetic, lifelong condition such as cystic fibrosis, muscular dystrophy, or hemophilia and their families seek treatment for their symptoms. It should be no different in our patient community, yet research to better understand how to live and treat certain aspects of achondroplasia remains controversial. I’m sharing my story because I am a strong proponent of research and the development of interventions for people living with dwarfism. As a leader in the Little People of America organization, I’ve had the opportunity to share my story and answer questions about my experience, but our voices need to be louder. Our community deserves medical options and the support of safe and beneficial research, which allows each us to make our own decisions when it comes to our health and overall happiness.
Originally posted on RadioMD.