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What is the prevalence of Pierre Robin Syndrome?

How many people does Pierre Robin Syndrome affect? Does it have the same prevalence in men and women? And in the different countries?

Prevalence of Pierre Robin Syndrome

Pierre Robin Syndrome is a rare congenital condition characterized by a combination of three features: a small lower jaw (micrognathia), a tongue that falls back in the throat (glossoptosis), and a cleft palate. The prevalence of this syndrome varies widely, estimated to be around 1 in 8,500 to 1 in 30,000 live births. It is more commonly observed in males than females. Early diagnosis and appropriate medical interventions are crucial for managing the associated breathing and feeding difficulties in affected infants.



Pierre Robin Syndrome (PRS) is a rare congenital condition characterized by a combination of three main features: a small lower jaw (micrognathia), a tongue that falls back in the throat (glossoptosis), and a cleft palate. The exact prevalence of PRS is challenging to determine due to variations in diagnostic criteria and underreporting. However, it is estimated to occur in approximately 1 in every 8,500 to 30,000 live births.



While PRS can occur as an isolated condition, it is often associated with other genetic disorders or syndromes, such as Stickler syndrome, Treacher Collins syndrome, or velocardiofacial syndrome. The severity of symptoms can vary widely among individuals with PRS, ranging from mild to severe respiratory and feeding difficulties.



Early diagnosis and intervention are crucial for managing PRS. Treatment may involve a multidisciplinary approach, including surgical correction of the cleft palate, positioning techniques to alleviate airway obstruction, and sometimes the use of devices like mandibular distraction osteogenesis. Close monitoring and support from healthcare professionals can significantly improve the quality of life for individuals with PRS.


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World map of Pierre Robin Syndrome

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Stories of Pierre Robin Syndrome

PIERRE ROBIN SYNDROME STORIES
Pierre Robin Syndrome stories
I started this foundation to create awareness for the syndrome as my son was born with the condition in October 2008. The Story of Joshua Parkes and how this foundation came into being. Joshua was born on the 20th October 2008, the happiest day ev...
Pierre Robin Syndrome stories
HELLO EVERYONE MY SON WAS BORN THE 3/3/16. MY SON IS 6 MONTHS OLD ALMOST 7MONTHS OLD HE HAS MICROCEPHALY,  LARYNGOMALICA, DANCING EYES, VOCAL CORD PALSY, BRAIN ATROPHY, PRS (PIERRE ROBIN SEQUENCE) AND A HIGH PALATE, SLEEP APNEA, BREATHING PROBLEMS....
Pierre Robin Syndrome stories
My daughter was born with mild PRS and a cleft soft palate. 
Pierre Robin Syndrome stories
My son Bernard (little B) was born on Aug. 2 2014. We had no idea at time of birth that anything was wrong with him. I had a scheduled C-section for Aug. 24 but he decided to come early. As I was laying on the operating table I heard a faint whimper ...
Pierre Robin Syndrome stories
My daughter was born 1/12/2010 midwife led birthing center flat and unresponsive. She required cpr and quickly and immediate transfer to the neonatal intensive care unit. She was then diagnosed with Pierre robin yndrome, microcargnathia and horse sho...

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