What Happened to Milly Shapiro? Actress is Grateful She Got Cleidocranial Dysplasia Treatment at Early Age

Despite a rare genetic condition affecting her appearance, “Hereditary” star Milly Shapiro doesn’t let it stop her from pursuing a career as an actress and becoming a remarkable influence on social media.

Broadway and Hollywood star Milly Shapiro is firm in her ambition to leave a lasting impression in Hollywood and to challenge prevailing notions of beauty and appearance.

There was a time when she faced criticism because of her unique appearance. However, that has not stopped her from sharing her cause and educating people on social media when necessary.

In 2020, Milly Shapiro opened up about being diagnosed with Cleidocranial Dysplasia or CCD, a rare genetic condition affecting teeth and bones, including the skull, face, spine, collarbones, and legs.

According to Johns Hopkins Medicine, people with CCD may have deformed or fragile bones. For her part, Shapiro stated that she underwent the necessary treatment for her condition early on. She said:

“I’m very grateful that I was able to get the treatment I needed when I was very young, so now that I’m older, it’s almost finished.”

In addition, Shapiro highlighted the Ensuring Lasting Smiles Act, introduced in February 2019. The act aims to ensure that individuals with rare disorders can receive insurance coverage for their medical treatment.

However, this coverage is unavailable, and Shapiro is determined to raise awareness. Additionally, she wants to address the unrealistic beauty standards of young females, like herself, with rare disorders.

The actress shared that her mother and sister also have CCD, and she looked up to them for support. Her goal is to inspire others with similar conditions to embrace their imperfections.

Shapiro has defied the standards set for child actors, who are often expected to have a more conventional appearance. However, because of CCD, she has faced criticism regarding her physical looks, which she cannot change.

For quite a while, some netizens thought Shapiro and the “Stranger Things” actor were related because they looked alike.

Shapiro said she faced unflattering remarks about her appearance when she played a chilling role in the 2018 horror movie “Hereditary,” alongside Toni Collette, Alex Wolff, and Gabriel Byrne.

Instead of consuming public criticism to herself, she has found a new platform — TikTok — to show her different personality. She has since expressed herself through unique makeup, hairstyles, and fashion.

The platform has had a positive impact on her life in several ways. It has made her feel more at ease, given her a sense of control over her appearance, and empowered her to take a stand against bullying.

Shapiro and her sister have been serving as one the youth ambassadors of No Bully, an organization on Broadway that focuses on teaching empathy and understanding to victims and bullies. Instead of expressing hate towards bullies, she showed sympathy, recognizing that they often hurt others because they are hurting themselves.

Interestingly, it was also on Broadway that Shapiro met actor Gaten Materazzo. For quite a while, some netizens thought Shapiro and the “Stranger Things” actor were related because they looked alike.

She addressed the confusion on TikTok and said both of them have CCD. She also revealed that Materazzo had once contacted her, wanting them to attend a CCD event together to connect with others.

Matarazzo has been open about his mild case of CCD, and his personal experience has been positive. He has never faced discrimination or bullying. However, he has acknowledged that not everyone with CCD is as fortunate as him, so he continues to raise awareness about the condition.

Despite his condition, he feels grateful for the opportunities in his career. Matarazzo found success in “Stranger Things,” where its creators, The Duffer brothers, incorporated his condition into the show’s storyline to make his character more relatable.