Cleidocranial dysplasia (CCD) is a birth defect that affects the development of bones and teeth. Individuals with CCD have underdeveloped collarbones, delayed or absent closing of their skull (soft spot), and many dental abnormalities. CCD occurs in 1 in 1 million births.
I am Dr. Kelly Wosnik. I am the only one in my family with Cleidocranial Dysplasia. CCD influenced my studies and career choice. I was a registered nurse for 5 years. I did my Master’s thesis on CCD. I went on to obtain a Doctorate in Nursing and have been a nurse practitioner for the past 13 years. My background in medicine helps me to better understand CCD. I want to share my understanding with others.
I was born in Reedley, California, in 1975. When I was born, it was obvious to my parents and doctors that something was wrong. My body, mostly my head, was shaped differently than a “normal” baby. My mom and dad drove 30 miles every week for the first 3 months of my life to a pediatrician, to figure out what was wrong. At 3 months of age, I was diagnosed with Cleidocranial Dysplasia.
I grew up knowing I was different.
For me, the most difficult part of CCD was all of the oral surgeries. My baby teeth never fell out on their own and the permanent teeth didn’t grow in on their own. Everything in my mouth had to be done manually. I started getting teeth pulled, a few at a time, at age 7. Each Christmas break, Easter vacation, and summer from age 7 to 19 I had some sort of oral or facial surgery.
There were two big problems with my dental care:
- The dentists, orthodontists, and oral surgeons had never treated anyone with my birth defect. Everything they tried was an experiment.
- Neither medical insurance, nor dental insurance covered the cost of my surgeries. Medical insurance considered my teeth problems to be dental. Dental insurance considered the surgeries cosmetic. My parents were paying for my surgeries until I was in college.
Technology has helped make the CCD world a bit smaller. In 2001, I talked with others with CCD for the first time. I conducted phone interviews for my Master’s thesis “CCD: The lived experience.” Eight years ago, I met someone with CCD for the very first time. Since then, I have been part of a Facebook group and hear from others regularly. These opportunities have blessed my life tremendously.
I have felt inspired to create a nonprofit organization for a long time to help others with CCD.
The main part of CCD Smiles is a website where those with CCD from around the world can come. I want the website to be a safe place. Those with CCD can talk with each other, share pictures, share stories, and find hope. I want others to know they are not alone.
I want the website to be a place of accurate and current medical information, written in plain English. If a mother has a baby who was just diagnosed, she could come to the website and find answers.
I want the website to be a place where doctors, dentists, orthodontists, and surgeons can come together and discuss treatment, research, and options for their patients.
I would love to have “CCD Smiles” be an organization to help cover the costs of oral/facial surgeries. If insurance isn’t going to help, then we can. I don’t want the medical/dental expense to keep parents from being able to provide beautiful smiles for their children.
My ultimate dream would be to have a national CCD conference in Salt Lake City, where those from around the world could meet. Those with CCD could be in a room FULL of others just like them. Doctors and dentists and researchers would also be invited to attend.
CCD Smiles: ONE IN A MILLION
Mission Statement: We bring global awareness, provide assistance for dental care, and support research to improve outcomes and quality of life for individuals with cleidocranial dysplasia.