Milly Shapiro and the Journey with Cleidocranial Dysplasia
Milly Shapiro, widely known for her haunting role as Charlie in the film Hereditary and for her Tony-honored performance in Matilda the Musical on Broadway, has become an influential voice for a rare genetic condition. While her talents have captivated audiences, public curiosity about her unique physical appearance has led to many questions, specifically regarding her health. Her transparent discussions about living with Cleidocranial Dysplasia have turned a personal health journey into a powerful platform for awareness.
What is Cleidocranial Dysplasia?
Cleidocranial Dysplasia (CCD) is a rare genetic disorder that primarily affects the development of bones and teeth. The condition is caused by a mutation in the RUNX2 gene, which is critical for bone formation. While the severity and symptoms can vary greatly from person to person, common characteristics include abnormalities of the skull, collarbones, and teeth. Crucially, CCD has no impact on a person's cognitive function or intelligence. Individuals with CCD, like Milly Shapiro and fellow actor Gaten Matarazzo from Stranger Things, are of normal intellect.
Key Features and Symptoms of CCD
The most prominent feature of CCD is the abnormal development of the collarbones (clavicles), which can be partially or completely absent. This can result in unusually narrow or sloping shoulders and hypermobility, allowing some individuals to touch their shoulders together in front of their body. The condition also significantly affects dental health, leading to a range of issues:
- Delayed eruption of permanent teeth: Adult teeth may be very late to emerge or never come in at all.
- Delayed loss of primary teeth: Baby teeth often do not fall out on their own.
- Supernumerary teeth: The presence of extra, or supplemental, teeth.
- Misalignment: Teeth and jaws often don't align correctly, requiring extensive orthodontic work.
Skull development is also impacted, with features such as a prominent forehead and a wide nasal bridge. The soft spots on an infant's skull (fontanelles) may close much later than normal or remain open into adulthood. Other possible skeletal issues include short stature, short fingers, and flat feet.
Milly Shapiro's Personal Story and Advocacy
Milly Shapiro has spoken candidly about her experiences with CCD, particularly the challenges related to her physical appearance and the extensive medical care required. In a 2019 Facebook post for the organization CCD Smiles, she shared that while the condition has made some things difficult, it has also made her a "deeper and more understanding person". She has used her public platform on social media to inspire others with similar conditions and to raise awareness about the disorder.
This advocacy helps counter misconceptions and promotes a more inclusive understanding of health and appearance. By sharing her story, Shapiro not only gives a face to a rare condition but also demonstrates that an individual's potential is not defined by their physical differences. Her success as an actress and musician stands as a powerful example of her abilities.
Is CCD Considered a Disability?
Whether CCD constitutes a disability is a complex question with varying interpretations. The physical effects of CCD can certainly cause impairments that may be considered disabling under certain definitions. For example, individuals may face challenges with physical activities due to skeletal abnormalities or require lifelong and costly medical interventions for dental and bone issues. This can impact daily life and necessitate accommodations. However, as it does not affect cognitive function, many people with CCD lead full and active lives without considering themselves disabled in a limiting sense.
The question of whether Milly Shapiro is disabled is best framed by understanding the condition and her personal perspective. She acknowledges the challenges but does not allow them to define her or her career. Her choice to be an advocate for CCD and her successful career progression highlight resilience rather than limitation.
Cleidocranial Dysplasia vs. Normal Development
| Characteristic | Cleidocranial Dysplasia (CCD) | Typical Development |
|---|---|---|
| Collarbones (Clavicles) | Underdeveloped, or completely absent, leading to hypermobility of shoulders | Normally developed, rigid, and provide stability to the shoulder joint |
| Skull Fontanelles | Delayed closure, often remaining open into adulthood | Close during early childhood |
| Dental Development | Delayed loss of primary teeth; delayed eruption and alignment of permanent teeth; extra teeth | Primary teeth fall out on a predictable timeline; permanent teeth erupt in childhood and adolescence |
| Stature | Often shorter than average height for one's family | Normal height range for one's family |
| Cognitive Function | Unaffected, normal intelligence | Normal intelligence |
| Facial Features | Prominent forehead, wide-set eyes, wide nasal bridge, small mid-face | Varies widely among individuals, without these specific anomalies |
Treatment and Management
While there is no cure for CCD, its symptoms can be managed effectively through various treatments. These are often coordinated by a multidisciplinary medical team. For dental issues, management involves extensive and long-term orthodontic care, and often, oral and maxillofacial surgeries to correct crowding and impaction of teeth. For skeletal concerns, orthopedic surgery may be needed to address specific bone abnormalities, and protective headgear may be recommended for children with open fontanelles. Hearing checks are also important due to a higher risk of ear infections and hearing loss.
In her public statements, Milly Shapiro has mentioned the considerable amount of time she has spent at the orthodontist, highlighting the hands-on nature of managing the condition. Support organizations like CCD Smiles offer resources and connect individuals with expert medical professionals who can provide specialized care.
Conclusion
To answer the question, "Is Milly Shapiro disabled?", one must consider the complexity of the term. Milly Shapiro has Cleidocranial Dysplasia, a genetic condition that causes physical challenges and requires ongoing medical attention, but it does not affect her intelligence. She is not defined by the physical traits associated with her condition but by her incredible talent, resilience, and successful career. By openly discussing her diagnosis, she serves as a powerful advocate for others with CCD, demonstrating that living with a genetic difference is not a barrier to success and fulfillment.
For more information on the genetic underpinnings of Cleidocranial Dysplasia, you can visit authoritative medical resources like MedlinePlus.
The Advocacy of Milly Shapiro and Other Public Figures with CCD
The increased public awareness of Cleidocranial Dysplasia, partly due to figures like Milly Shapiro and Gaten Matarazzo, has had a positive effect. It has helped reduce the stigma associated with physical differences and has shown the world that these conditions do not limit one's potential. By using their visibility to educate and inspire, these individuals contribute to a more accepting and informed society.
