Milly Shapiro's Diagnosis: Cleidocranial Dysplasia
In 2020, actress and singer Milly Shapiro made her diagnosis of Cleidocranial Dysplasia (CCD) public, providing clarity to fans and sparking a conversation about the condition. This rare genetic disorder, which affects the bones and teeth, is something she shares with both her mother and sister, highlighting its hereditary nature. Rather than concealing her health condition, Shapiro has embraced her platform to educate and advocate, turning a personal health matter into a message of empowerment.
What is Cleidocranial Dysplasia (CCD)?
Cleidocranial Dysplasia, also known as Cleidocranial Dysostosis, is a genetic condition that primarily affects the development of bones and teeth. The condition is caused by a mutation in the RUNX2 gene, which is critical for the proper formation of bone and cartilage. The name itself comes from the Greek words for collarbone (cleido) and skull (cranial), reflecting the main areas of the body affected.
Common Features of CCD
People with CCD can present with a variety of symptoms, which vary in severity. Some of the most common features include:
- Dental Issues: Delayed or absent eruption of permanent teeth, supernumerary (extra) teeth, and dental crowding are common. Milly Shapiro has publicly spoken about the extensive dental surgeries she has undergone throughout her life.
- Skeletal Abnormalities: Affected individuals may have underdeveloped or absent collarbones, which can cause hypermobility in the shoulders, allowing them to touch their shoulders together. A prominent forehead and a wide, flat nasal bridge are also frequently observed.
- Skull and Facial Features: Large fontanelles (soft spots) on an infant's skull may close late or not at all. Facial features can include wide-set eyes and a small midface.
- No Impact on Intelligence: It's important to note that CCD has no effect on a person's cognitive function or intellect.
Milly Shapiro's Personal Journey and Advocacy
Shapiro's experience with CCD began in childhood, involving numerous surgeries and orthodontic procedures to manage the effects of the condition. She has spoken about how this led her to spend much of her life hiding her appearance, feeling insecure about how she looked. However, her perspective shifted dramatically. She has used her public presence, including her popular TikTok account, to embrace her unique look and challenge restrictive beauty standards in the entertainment industry.
Her journey goes beyond personal acceptance. Shapiro has become a vocal advocate for the rare disease community. In 2019, she began championing the Ensuring Lasting Smiles Act, a proposed piece of U.S. legislation aimed at mandating insurance coverage for treatments related to congenital anomalies. She highlighted the financial burden placed on families with these conditions and urged others to contact their representatives to support the act.
A Comparison of CCD Advocacy
Milly Shapiro is not the only celebrity raising awareness for Cleidocranial Dysplasia. Gaten Matarazzo, known for his role as Dustin Henderson in Stranger Things, has also been open about his diagnosis and its effects. A comparison of their advocacy efforts shows the different ways public figures can bring attention to such conditions.
| Aspect | Milly Shapiro's Advocacy | Gaten Matarazzo's Advocacy |
|---|---|---|
| Platform | Utilizes social media (e.g., TikTok, Instagram) and interviews to share her personal journey and empower others to embrace their individuality. | Incorporated his condition into his character's storyline on a major television show, bringing CCD into mainstream pop culture. |
| Focus | Primarily focused on challenging conventional beauty standards and advocating for specific legislative changes like the Ensuring Lasting Smiles Act. | Largely focused on general awareness and using his character to normalize the condition for a wide audience. |
| Impact | Inspires self-acceptance and provides tangible calls-to-action for policy change. | Normalizes a rare condition for millions of viewers, offering a positive portrayal of CCD. |
The Genetics and Treatment of CCD
The RUNX2 gene mutation can be inherited from a parent or occur spontaneously. The condition is present at birth, and while some cases can be mild and difficult to diagnose, others are more pronounced. Since CCD can affect many bones, treatment is often a multi-disciplinary effort involving different specialists, and can include:
- Dental and Orthodontic Care: To manage dental issues like overcrowding and unerupted permanent teeth.
- Oral and Maxillofacial Surgery: To address issues with jaw and facial bone development.
- Orthopedic Care: To manage skeletal issues, such as those related to the collarbones and other bones.
- Specialist Consultations: For issues with hearing, sinusitis, and other related complications.
More information on Cleidocranial Dysplasia can be found from authoritative medical sources like Johns Hopkins Medicine, which offers detailed medical explanations and guidance.
Conclusion: A story of empowerment
Milly Shapiro's willingness to openly discuss her diagnosis of Cleidocranial Dysplasia transformed a private health matter into a powerful public narrative. By sharing her experiences with a genetic condition and actively advocating for legislative change, she has not only raised awareness but also empowered others to embrace their differences. Her journey demonstrates that having an illness does not define a person, and that vulnerability can be a source of strength and positive change.
