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What is the prevalence of Parry-Romberg syndrome / Progressive hemifacial atrophy?

How many people does Parry-Romberg syndrome / Progressive hemifacial atrophy affect? Does it have the same prevalence in men and women? And in the different countries?

Prevalence of Parry-Romberg syndrome / Progressive hemifacial atrophy

Parry-Romberg syndrome, also known as Progressive Hemifacial Atrophy, is a rare disorder characterized by the gradual wasting away of the tissues on one side of the face. The exact prevalence of this condition is not well-established, but it is estimated to affect approximately 1 in 700,000 individuals. The onset typically occurs in childhood or adolescence and progresses slowly over several years. The cause of Parry-Romberg syndrome remains unknown, and there is currently no cure. Treatment options focus on managing symptoms and may include reconstructive surgery, cosmetic procedures, and medication to alleviate pain or inflammation.

Parry-Romberg syndrome, also known as Progressive Hemifacial Atrophy, is a rare disorder characterized by the progressive wasting away of the tissues on one side of the face. The exact prevalence of this syndrome is not well-established, but it is estimated to affect approximately 1 in 700,000 to 1 in 1,000,000 individuals.


This condition typically begins in childhood or adolescence and progresses slowly over several years, causing various symptoms such as facial asymmetry, loss of fat and muscle, skin changes, and sometimes neurological complications. The severity and rate of progression can vary widely among affected individuals.


Parry-Romberg syndrome predominantly affects females more than males, with a ratio of approximately 3:1. While the exact cause of this syndrome remains unknown, it is believed to involve an autoimmune or inflammatory process affecting the blood vessels and tissues on one side of the face.


Diagnosis of Parry-Romberg syndrome is primarily based on clinical evaluation, medical history, and imaging studies. Treatment options are limited and mainly focus on managing the symptoms and improving cosmetic appearance. These may include reconstructive surgery, dermal fillers, and other supportive measures.


Overall, Parry-Romberg syndrome is a rare condition with a low prevalence, but its impact on affected individuals can be significant, both physically and emotionally.


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My first symptoms showed up at about 4 or 5. Alopecia and skin discoloration. Slowly it progressed and at about 10 My parents began the search. I was officially diagnosed at 12 by doctors at UCLA. I was then sent to UCSF and went through several team...

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