Who is Milly Shapiro and what is her Disorder? (Cleidocranial Dysplasia)

In this blog, we will cover who is Milly Shapiro, what is Cleidocranial Dysplasia, symptoms, causes, treatment, Milly Shapiro’s journey through Cleidocranial Dysplasia, and also answer frequently asked questions

Who is Milly Shapiro and what is her Disorder? (Cleidocranial Dysplasia)

Milly Shapiro was born with a birth abnormality known as ‘Cleidocranial Dysplasia,’ which is a genetic illness that runs in families and affects people at birth.

Even though it is not technically a mental disorder but a genetic disease or condition, Milly Shapiro has been suffering from the condition since her birth as it is a genetic defect.

Who is Milly Shapiro?

Milly Shapiro is an American actress who has a genetically inherited medical condition called Cleidocranial dysplasia. 

Let us understand what Cleidocranial dysplasia is, what are its symptoms and causes and is there any treatment available for the same. 

What is Cleidocranial dysplasia? 

Cleidocranial dysplasia is a rare hereditary disorder that affects the teeth and bones, such as the skull, face, spine, collarbones, and legs. People with CCD’s bones may be formed differently or are more fragile than usual, and some bones might be missing like a collarbone.

The term “cleidocranial dysplasia” is derived from the Greek words “cleido” (collarbones) and “cranial” (skull). CCD is characterized by anomalies of the skull and collarbone, as well as dental abnormalities.

Signs of cleidocranial dysplasia 

Skulls and Bones

Collarbones, commonly known as clavicles, are generally underdeveloped or missing in people with cleidocranial dysplasia (“cleido-” in the condition name refers to these bones). As a result, their shoulders are thin and slanted, and they can be pushed exceptionally close together in front of the body, and in some cases, made to meet in the middle. 

This disorder is also characterised by delayed maturity of the skull (cranium), which includes delayed closure of the growth lines where the bones of the skull meet (sutures) and larger than normal voids (fontanelles) between the skull bones, which are visible as “soft spots” on newborns’ skulls. 

The fontanelles generally close in early childhood, but in persons with this disease, they may remain open throughout their lives. Wormian bones are additional fragments of bone seen within the sutures in some people with cleidocranial dysplasia.

Hands, legs, and face 

Affected people are frequently shorter than their peers of the same age group. Flat feet, knock knees, small shoulder blades (scapulae), and an abnormal spine curvature are all frequent, as are short, tapering fingers and broad thumbs (scoliosis). 

Brachycephaly is characterized by a wide, short skull, a big forehead, wide-set eyes (hypertelorism), a flat nose, and a small upper jaw.

Bone density 

Cleidocranial dysplasia patients often have a poor bone density (osteopenia) and may develop osteoporosis, a disease that causes bones to become brittle and fracture-prone, at a young age.

Women with cleidocranial dysplasia are more likely to need a cesarean section to give birth due to a narrow pelvis that inhibits the infant’s head from going through.

Dental abnormalities 

Typical dental anomalies in cleidocranial dysplasia include delayed loss of primary (baby) teeth, delayed emergence of secondary (adult) teeth, strangely shaped, peg-like teeth, misalignment of the teeth, and jaws (malocclusion), and additional teeth, which are sometimes accompanied by cysts in the gums.

Motor skills 

Hearing loss is common in people with cleidocranial dysplasia, and they are more susceptible to sinus and ear infections. The motor abilities of certain young children with this illness, such as crawling and walking, are moderately delayed, but their IQ is unaffected.

Causes of Cleidocranial dysplasia

Cleidocranial dysplasia (CCD) is caused by a malfunction of the RUNX2 gene. Pathogenic variations are DNA alterations that cause genes to function improperly, or sometimes, not at all.


Cleidocranial dysplasia is a genetic disorder that is handed down through the generations. Each gene is duplicated twice in each person. The gene is autosomal, which means it can be found on one of the numbered chromosomes in both sexes.

In a dominant illness, just one defective copy of a gene is required. Either parent is capable of passing. They’re passing the mutation down to their offspring. An autosomal dominant illness may arise as a result.

Each kid of a person with an autosomal dominant condition has a 50% or 1 in 2 chance of inheriting the condition. Chances of passing down the mutation and the disease are more through parents and grandparents. Children who are born with a dominant gene change is almost always a good thing.

Children who inherit a dominant gene are more likely to get the disorder than their parents, but they may be affected more or less severely. A person with an autosomal dominant disorder may have a gene mutation but show no signs associated with the condition

Diagnosis of CCD

Cleidocranial dysplasia is diagnosed using symptoms, a clinical exam, imaging tools, and the results of genetic testing (CCD). Imaging examinations include a skeletal survey (a series of X-rays of the skeleton’s bones) and dental x-rays.

Resources for Testing

Details on the genetic tests available for this condition can be found on the Genetic Testing Registry (GTR). The GTR’s target audience is healthcare providers and researchers. Patients and consumers should see a doctor or a genetics expert if they have specific queries about a genetic test.

Orphanet provides a list of overseas laboratories that offer this condition’s diagnostic tests.

Treatment for CCD

Treatment is determined by the patient’s reaction to the syndrome. To improve their comfort, function, and well-being, people with CCD may have a variety of orthopaedic, face reconstructive, and dental operations. Treatments that may be suggested include:

  • Facial reconstructive surgery on the face’s bones to remodel the forehead or cheekbones in children.
  • Spinal fusion operations are used to stabilise the spine.
  • Surgery on the lower leg to repair knock knees (knees that bend inward toward the centre of the body)
  • Fractures caused by brittle bones can be repaired surgically.
  • Small collar bone fragments that can irritate the brachial plexus and cause arm pain or nerve disorders are removed.
  • In order to treat ear infections, ear tubes are used.
  • When participating in sports, a protective helmet is used to protect the open regions of the head.
  • Bone-strengthening calcium and vitamin D supplements

If you’re facing this, it may be a good idea to seek the help of a therapist or other mental health professional. You can find a therapist at BetterHelp who can help you learn how to cope and address it.

Milly Shapiro’s struggles with Cleidocranial Dysplasia: A genetic disorder 

Amelia Lee Shapiro, popularly known as Milly Shapiro, was born in Tampa, Florida, on July 16, 2002. Milly Shapiro is an actress from the United States. 

Milly has reached milestones in her career that many actresses can only dream of, despite the fact that she is only a teenager with less than ten acting credits. Milly began her acting career in 2013 with a role in Matilda The Musical. 

She starred alongside Oona Laurence, Sophia Gennusa, and Bailey Ryon in the major role of Matilda Wormwood. She rose to prominence in 2018 after starring in the horror film Hereditary.

Milly was born with Cleidocranial Dysplasia, a hereditary disease (CCD). It has an impact on bone and tooth formation. Partially or completely absent collarbones, a narrow pelvis, and a lower stature are all common symptoms of CCD. 

It also takes longer than expected for the crevices between the bones of the skull to seal. Milly revealed the issue in a new TikTok in March 2020 after receiving several messages claiming she resembled Gaten Matarazzo, who plays Dustin in Stranger Things and also has the condition.

In 2019, they attended a CCD event together. In an interview with Vice, she revealed how the video explanation rapidly became one of her most popular pieces.

She said, “I wanted to explain why that is. We actually have the same bone disorder; it affects your bones, your teeth, and your facial structure. People with cleidocranial dysplasia tend to look similar. So, I sat down, thinking I’d make a video real quick to explain it, so people can know why. Now it has a million views!”

Milly has made peace with her medical condition. She does not consider the disease to be her weakness. Her disability does not prevent her from pursuing her aspirations.


People with cleidocranial dysplasia can lead a happy and healthy life. Milly Shapiro’s vibrant onscreen performance demonstrates that cleidocranial dysplasia has little effect on intellect and succes of an individual.

We covered all about the genetic disorder Milly is suffering from, symptoms of CCD, and also included the treatment for it. 

Frequently asked questions (FAQs): Who is Milly Shapiro and what is her Disorder? (Cleidocranial Dysplasia)

How to treat dental problems caused by cleidocranial dysplasia? 

Extra or impacted teeth can be addressed through orthodontics and oral surgery. The initial stage is a thorough examination of each tooth, followed by tooth extraction if necessary. To keep teeth viable, practitioners may remove gum tissue and use braces to guide the growth of those teeth into the mouth. Some people prefer implants, bridges, or dentures for a speedier result. To correct the bite, jaw surgery may be required.

Are Ben Shapiro and Milly related?

Yes, Ben Shapiro is the brother of Milly and Abigail Shapiro. 

Is cleidocranial dysplasia a life-threatening condition?

Cleidocranial dysplasia (CCD) is a rare condition affecting membranous bones that is seldom fatal in infancy. The calvaria is damaged. The severity of clavicular abnormalities ranges from a slight unilateral deficiency to a complete absence.

How can I find a cleidocranial dysplasia specialist?

You can seek medical advice from doctors or other healthcare providers who have previously dealt with this issue. Advocacy groups, clinical studies, and publications published in medical journals are all good places to look for specialists. 

You could also contact a local expert. A university or a tertiary medical facility, as these institutions are more prone to face challenges.

Circumstances and are equipped with the most cutting-edge technologies and therapies.

If you can’t find a specialist in your area, national or international specialists may be able to help. Through conferences or research initiatives, they may be able to refer you to someone they know. If you can’t go to them, some specialists may be ready to talk with you or your local doctors over the phone or by email.

Which chromosome is affected in cleidocranial dysplasia?

CBFA1 is the gene for cleidocranial dysplasia, which has been localised to chromosome 6p21. The genetic information for each individual is carried by chromosomes, which are found in the nucleus of human cells. Normally, human body cells have 46 chromosomes.

What are the other names for cleidocranial dysplasia?

The other names for cleidocranial dysplasia are:

  • Cleidocranial dysostosis
  • Dento-osseous dysplasia
  • Marie-Sainton syndrome



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