I am the only one in my family with CCD (Cleidocranial Dysplasia), which was a random mutation. Having CCD influenced my studies and career choices. I have always been fascinated by the body, genetics, and helping others with physical or emotional health problems. I started my career as an emergency room registered nurse. I did my Master’s thesis on CCD and then went on to obtain a Doctorate in Nursing Practice (DNP) degree. I have been a nurse practitioner for the past 14 years, working in family medicine and mental health. My background in medicine helps me better understand CCD. I want to share my experience and medical 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’s. At 3 months of age, I was diagnosed with Cleidocranial Dysplasia.
I grew up knowing I was different. The most difficult part of CCD was all the oral and facial surgeries. My baby teeth never fell out on their own, my permanent teeth didn’t grow in on their own, and I had several extra teeth which had to be surgically removed. Everything in my mouth had to be done manually. I started having oral surgeries at age 7 and I spent most of my Christmas, Spring, and Summer breaks undergoing surgery. My last major surgery was when I was 19 years old.
CCD dental treatment was not easily navigated. My dentists, orthodontists, and oral surgeons had never treated anyone with CCD. Everything they tried was experimental.
Medical insurance and dental insurance did not cover 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.
When I was growing up, I didn’t know anyone with CCD. In 2001, technology helped me to connect with other people with CCD for the first time. I heard about other people’s experiences as I conducted phone interviews for my Master’s thesis “CCD: The lived experience.” Eight years ago, I met Steffani and her daughter Hally, who have CCD, for the very first time.
I felt inspired to create a nonprofit organization to help others with CCD. I started working on the foundation in 2013. In 2016, Gaten Matarazzo’s dad contacted me. Together, we made CCD Smiles an official IRS approved nonprofit organization in January 2017. Since it’s official beginnings, we have had gatherings and fundraisers across the country. I have met 38 other people with CCD, which has been a tremendous blessing in my life.
Gaten Matarazzo, from the series Stranger Things, is a huge part of bringing awareness to CCD. As his popularity in Hollywood has grown, so has familiarity with CCD and CCD Smiles.
CCD Smiles is still in its infancy, but you can go to www.ccdsmiles.org to learn more about us and watch us grow! Currently, the website is a place for donations, purchasing CCD swag and education about CCD. In the future, the website will be a place where those with CCD can connect, share pictures, exchange stories, and find hope. I want others to know they are not alone. It will also provide current and accurate medical information, written in plain English. Doctors, dentists, orthodontists, and surgeons can come together and discuss treatment, research, and options for their patients.
As CCD Smiles grows and donations are made, we can 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 is coming true. July 13-15, 2018 will be the first national CCD conference in Salt Lake City. Watch the website for more information. If anyone is interested in donating time, money, or talents to this event, please email me at email@example.com.
CCD Smiles 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.
CCD Smiles can be found in the media and on social media— Instagram, Facebook and Twitter (@ccd_smiles, #ccdsmiles)
Originally published on Utah Valley Health and Wellness Magazine