Introduction
Gaten Matarazzo is widely recognized for his role in Stranger Things, but he is also known for his advocacy work related to his rare genetic disorder, Cleidocranial Dysplasia (CCD). In this article we will explore what CCD is, its prevalence, symptoms, Gaten’s journey living with the condition, his advocacy efforts, latest scientific research, and break down the stigma surrounding genetic disorders.
Cleidocranial Dysplasia: What Is It?
Cleidocranial Dysplasia is a genetic disorder that affects the development of bones and teeth. CCD is caused by mutations in the RUNX2 gene. This gene provides instructions for making a protein that is necessary for the formation and maturation o f bones and teeth.
The prevalence of CCD is relatively low, with around 1 in 1 million people being born with the condition. CCD affects males and females equally and is often diagnosed at birth or during early childhood.
CCD ultimately affects the development of bones and teeth, resulting in a wide range of physical characteristics and symptoms. People with CCD have shorter stature, a bell-shaped chest, a broad, flat bridge of the nose, and an increased angle between the arms and forearms.
Living with Cleidocranial Dysplasia: Gaten Matarazzo’s Journey
For Gaten Matarazzo, living with CCD has been a journey filled with ups and downs. He was born with partial hearing loss due to CCD and was fitted with hearing aids from a young age. This has limited his ability to hear high-pitched sounds and meant that he often struggles in loud environments, such as on set filming Stranger Things.
Gaten has also shared that he has had numerous dental surgeries as a result of his CCD. He has missing permanent teeth and a high palate, which has made eating and speaking difficult for him at times.
Despite these challenges, Gaten has also spoken openly about the positive aspects of living with CCD. He has credited the condition with fostering his sense of humor and creativity, and has emphasized that his differences have helped him to stand out and find success in the entertainment industry.
Gaten has also spoken openly about his experiences with bullying and teasing due to his CCD. He has shared that he was once called a ‘freak’ by a classmate because of his hearing aids and experiences with tooth extractions. However, Gaten has also shared that he has found strength in these experiences and uses them to fuel his advocacy work today.
Raising Awareness: Gaten Matarazzo’s Advocacy Efforts
Gaten Matarazzo has used his platform to raise awareness about CCD and genetic disorders more generally. He has been vocal about his experiences with CCD and has emphasized the importance of destigmatizing genetic differences.
Gaten has also started his own foundation, called The Gaten Matarazzo III Foundation, which aims to raise awareness and funds for CCD research. The foundation has partnered with numerous organizations, including The CCD Smiles Project and the Children’s Miracle Network, to support individuals with CCD and other craniofacial conditions.
Matarazzo has been featured in TV segments and interviews with medical professionals to discuss CCD, and in 2020 he worked with the nonprofit disability rights organization RespectAbility to produce a public service announcement designed to create visibility around disabled representation in the entertainment industry.
The Scientific Landscape of Cleidocranial Dysplasia
The scientific understanding of CCD and its causes is relatively new. It was only in the early 2000s that researchers were able to identify the specific gene responsible for CCD. Since then, there has been significant progress in our understanding of the genetic basis of the condition.
Recent studies have found that the RUNX2 gene mutation present in CCD affects bone cell growth in a complex way, like the increasing Mecom expression in people with the RUNX2 mutation causing CCD. This makes treatment options difficult to develop as scientists researchers try to develop targeted therapies that can differentiate between CCD cells and non-CCD cells.
There is research being carried out to develop gene-editing treatments that target the specific mutations causing CCD, but there is still a long way to go before these treatments are effective and accessible to those living with the condition.
Breaking Down Stigma: An Interview with Gaten Matarazzo
In an interview with Gaten Matarazzo, RespectAbility executive director Jennifer Laszlo Mizrahi discussed the stigma surrounding genetic disorders, how to reduce bullying, and the importance of self-acceptance. Matarazzo also spoke about his experience navigating bullying and difficulties with school as a child.
He also emphasized that acceptance and self-love are crucial to overcoming the challenges that come with CCD and other genetic conditions. Matarazzo noted that people with genetic differences are just as deserving of love, respect, and opportunities as everyone else.
Conclusion
Living with a rare genetic disorder like Cleidocranial Dysplasia poses unique challenges for those affected, but the journey can also be filled with strength, resilience, and a powerful sense of advocacy. Gaten Matarazzo’s journey with CCD is an inspiring example of using one’s experiences to raise awareness, reduce stigma, and create a culture of empathy and acceptance for all. It is important that we strive to understand genetic differences and work to support those who are affected by them, helping to create a more inclusive and loving world.
