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“One in two hundred.” Those were the words my doctor spoke to my mother as I lay in recovery from my fifteenth-plus surgery in August 2019. When I awakened, my mother repeated those very words to me. My name is Ashley Cavalier, and I was born with a rare bone condition, Ollier disease.
Ollier disease is a skeletal disorder where multiple (benign) tumors form near the growth plates in the bones causing deformities. The disease mainly affects the left side of my body, causing asymmetrical growth in which the left arm and leg are both shorter than the right. In my early teenage years, I was diagnosed with Maffucci syndrome. Maffucci syndrome is closely related to Ollier, where the tumors can show up as reddish/purplish vascular lesions in the skin consisting of abnormal blood vessels, better known as hemangiomas. In my case, these lesions have developed all over my left hand, the bottom of my feet, and as an adult, my right hand and forehead.
Due to the deformities both Ollier disease and Maffucci syndrome have caused, I’ve had multiple corrective surgeries, including leg lengthenings, straightening of the bone due to bowing in the right leg (to compensate for the limb difference), and several removals of the vascular tumors that range from my upper to lower body. The condition has also caused me to have a short stature, where I measure a whopping 4’8” in height.
Though the disability has impacted me physically, what people don’t know is the mental toll is just as powerful. As I matured into a young woman, the deformities became more prominent, and the differences between my peers and me became more obvious, making it harder to accept. My clothing choices became more limited because of the insecurities I clung to. I didn’t feel comfortable wearing any article of clothing that would expose scars from prior surgeries or deformities that were constantly forming. I wanted to avoid the stares of disgust and disbelief I often received. After all, the limping was enough to draw attention. Tennis shoes had to be modified with an external lift to compensate for the length difference in extremities along with two shoe sizes. One size for the left foot and another for the right foot.
There was no one in my everyday life that I could relate to, and there was a lack of representation in the media for those with disabilities, let alone those of color. Society and the media pushed this very boxed-in standard of what beauty looked like, in which I knew I’d never fit. I felt isolated, and my only outlet was my conversations with God at bedtime, begging him to give me the strength to embrace what I hated about myself.
In the summer of 2019, I was on short-term disability for a surgical procedure that required the excision of multiple hemangiomas from the bottom right foot and skin grafting from my upper right thigh. My recovery lasted six weeks, which put my idea of normal life on pause. The statement, “1 in 200,” replayed over and over in my mind and sat with me for days until I was able to make sense of it. I was chosen. Everything that I had been through was a part of my purpose. I finally decided that instead of hiding all the things that set me apart from everyone else, I would use them as my superpower. “I am one in two hundred,” which meant my story had to be told.
I wanted to tell my story for the little girl who grew up not feeling worthy or beautiful so that children with differences and disabilities everywhere would have someone they could relate to, unlike me as a child.
On November 4, 2022, I published Doctor, Do You Know… on Amazon. This book details my challenges as a child. Over the course of several doctor visits, the main character questions her doctor about why her physical differences exist. In the end, she learns that she is made in God’s image.
I hope you find Doctor, Do You Know… to be a great conversation starter in not only how important it is to show compassion to one another but also to embrace every part of yourself that makes you, you.
Ashley Cavalier is a 28-year-old resident of Baton Rouge, LA, who was born with a rare bone disease that causes multiple tumors. Despite her medical challenges, she graduated magna cum laude in 2014 from ITI Technical College with an associate’s degree in office administration and a certification in medical billing/coding. Ashley now works at Unum, a Fortune 500 Company that specializes in providing affordable access to disability, life, accident, critical illness, dental, and vision benefits through the workplace. She’s held several roles within her five years as an employee and is currently a Dental and Vision Claims Processor. She’s hopeful that Doctor, Do You Know… will be one of many books that spread awareness of the disabled community and promote self-love.
Connect with Ashley Cavalier on Instagram, where she shares her medical journey and advocates for others struggling with self-image and disabilities.
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