Actor Gaten Matarazzo—who plays the character Dustin on the popular Netflix original drama series Stranger Things—shares what life is like living with the rare bone disorder cleidocranial dysplasia (CCD).

CCD is a genetic disorder affecting the development of the bones and teeth, and according to David A. Staffenberg, MD, vice chair for pediatric plastic surgery at NYU Langone Health, “We think of CCD as something that is very rare, but it may very well be more common than that because some people who have CCD may be very mildly affected, so it essentially goes unnoticed or undiagnosed,” Dr. Staffenberg tells SELF.

Dr. Staffenberg goes on to explain the importance of having a multidisciplinary team of surgeons, therapists, and geneticists to comprehensively treat this condition since it can affect many places on the body, including the head, collarbone, legs, and feet.

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