Gaten Matarazzo, the actor best known for his role as Dustin Henderson in Netflix's hit series "Stranger Things," has been open about living with a rare genetic condition called Cleidocranial Dysplasia (CCD). Matarazzo's willingness to discuss his experiences has significantly raised awareness and understanding of this often misunderstood disorder.
Cleidocranial Dysplasia is a congenital genetic disorder that primarily affects the development of bones and teeth. The condition is most commonly caused by a mutation in the RUNX2 gene, which plays a crucial role in osteoblast differentiation, the process responsible for bone formation. This gene is particularly important for intramembranous ossification, the process by which flat bones like the skull, face, and collarbones develop directly from connective tissue.
CCD affects approximately one in one million people. The severity of the condition can vary significantly, with some individuals experiencing mild symptoms while others face more significant challenges. Common characteristics of CCD include underdeveloped or missing collarbones, delayed closure of the skull's soft spots (fontanelles), dental abnormalities, and other skeletal issues.
One of the most recognizable features of CCD is the underdevelopment or absence of collarbones (clavicles). This can result in increased flexibility in the shoulders. Dental abnormalities are also common, including delayed emergence of permanent teeth, failure to lose primary teeth, the presence of extra teeth (supernumerary teeth), dental crowding, and misalignment of teeth (malocclusion). Other potential symptoms include frequent sinus and ear infections, hearing loss, a curved spine (scoliosis), and short stature or delayed growth.
Matarazzo's experience with CCD has been relatively positive, and he acknowledges that it has, in many ways, benefited his career. He has stated that most of the roles he has secured are a direct result of his condition. However, he also expresses a desire to evolve beyond roles specifically related to his condition and to showcase his versatility as an actor.
His openness has not only brought awareness but has also inspired others with CCD to embrace their condition. Matarazzo actively supports the organization CCD Smiles, which provides dental treatment and funds research for individuals with CCD.
Diagnosis of CCD typically begins with a physical examination, particularly when visible signs like the absence of collarbones or delayed skull closure are apparent. X-rays are crucial for revealing skeletal differences, and genetic testing can identify mutations in the RUNX2 gene. Dental X-rays can also help detect extra or impacted teeth.
While there is no cure for CCD, treatment focuses on managing the symptoms and improving the quality of life for those affected. This may involve dental treatment, surgery to correct skeletal abnormalities, and management of any associated health issues. With appropriate medical and dental care, individuals with CCD can lead full and healthy lives.
Matarazzo's advocacy has played a crucial role in increasing public awareness. By sharing his personal journey, he has helped to reduce stigma and promote understanding of this rare genetic condition.
