Fewer than 40 Worldwide... Five Siblings Suffering from 'Sajaeolgul Syndrome'

Suspected 'Leontiasis' with Excessive Facial Bone Growth
"Fewer than 40 Cases Reported Worldwide"

A heartbreaking story has emerged about five siblings who grew up being mocked as 'aliens' due to facial deformities caused by an unknown disease.

Faces of Dominican Republic siblings suffering from Leontiasis, also known as 'lion face syndrome'
[Photo by The Sun]

The British daily The Sun recently reported on five siblings from a small village in the Dominican Republic who suffer from a rare disease that causes abnormal swelling of the face.

The siblings' cheekbones and noses protrude as if swollen, and due to the abnormal deformation of their bone structure, the space between their eyes is wide, and their teeth are crooked and misaligned. Because of this, they have been subjected to ridicule and insults calling them 'aliens' since childhood.

In addition, they periodically suffer from headaches, breathing difficulties, dizziness, and body aches, which are presumed to stem from their facial deformities.

The cause of these symptoms is unclear. Their parents do not have related conditions, and among their 12 siblings, only these five exhibit such symptoms, leaving medical professionals puzzled.

Medical experts currently suspect the most likely diagnosis to be "leontiasis," commonly known as "lion face syndrome." The term derives from the Greek word "leon," meaning lion, because patients with this condition experience excessive growth of the facial and cranial bones, causing the facial bones to twist and resemble a lion's face.

Globally, fewer than 40 cases have been reported, making it an extremely rare disease. It is reported that genetic mutations occurring early in fetal development have the greatest impact, and it can also manifest due to various causes including syphilis, tumors, and gigantism. Uncontrolled growth of facial bones can compress nerves, potentially leading to blindness, hearing loss, and intellectual disabilities.

Neurologist Dr. Franly Vasquez stated, "It is known to occur due to calcium accumulation in the bones forming the patient's face and skull," adding, "Unfortunately, there is no cure yet. The goal should be symptom improvement." He further explained, "The only existing treatment involves exposing the grown bones to carve them down or, if possible, completely removing the bones."

Meanwhile, the media reported that these siblings desperately need jobs but face difficulties finding employment due to their appearance. The cause of the disease has not yet been identified because the cost of testing is burdensome, and they are only receiving treatment for symptoms. It is known that they have shared their story to raise funds for treatment support.