Lizard people: The strange and unique disease that has affected an Indonesian family

2023-08-14 09:02:00, Kuriozitete CNA

Lizard people: The strange and unique disease that has affected an Indonesian

In the remote village of Kedungkang in Indonesia, a family is dealing with a unique and rare medical condition that has baffled experts and shocked the local community. The Manurung family, led by Siarif Ali Surja Manurung, is faced with a syndrome so unique and devastating that at first everything was compared to a fictional tale.

The condition affecting the Manurung family has been identified as Treacher Collins Syndrome, a rare genetic disorder that manifests itself in facial deformities and other health abnormalities. This family that resided in the isolated village of Kedungkang located amidst lush vegetation.

She had a simple life, characterized by working in agriculture and close ties with the local community. Siarif Ali Suria, the patriarch of the family, was known for his gentle nature and devotion to his wife and 3 children.

It wasn't until the birth of their fourth child that their lives took a surprising turn. The birth of their youngest son, Anuar, was accompanied by disturbing abnormalities, which the family had never seen before. Anuari's facial features, especially his jaw, were very underdeveloped, leading to difficulty breathing and feeding.

As he grew older, his ears and eyes also developed deformities, adding to his life's challenges. Desperate, the family took him to various specialists around the country. After a series of examinations, consultations and genetic tests, experts finally arrived at a definitive diagnosis: Treacher Collins Syndrome (TCS).

This rare genetic disorder affects the development of facial bones and tissues during fetal development, leading to facial deformities and hearing impairment. It is believed to arise from mutations in the TCOF1, POLR1C or POLR1D genes, although in some cases the cause remains unidentified.

Life with TCS syndrome has not been without difficulties for the Manurung family. Anuari's condition required many surgeries and constant medical care during the first years of his life. But despite the emotional and financial challenges, the family remained united in their determination to provide the best care and support for Anuar.

The community also rallied behind them, offering encouragement and help in their most difficult time. Treacher-Collins syndrome, also known as mandibulofacial dysostosis, is an extremely rare genetic disorder that affects approximately 1 in 50,000 successful births worldwide.

Although the condition varies in severity between individuals, TCS mainly affects the bones and tissues of the face, resulting in underdeveloped cheekbones, jawbones and a chin. Consequently, individuals affected by this syndrome have a distinctive appearance characterized by downward-slanting eyes, small and malformed ears, and a receding chin.

In addition to facial abnormalities, TCS can lead to hearing loss due to malformation of middle ear structures. Hearing loss is common in individuals with TCS, requiring intervention with hearing aids or corrective surgery.

Underdeveloped jaw and facial structures can obstruct the airway, leading to serious breathing problems, especially during sleep. Additionally, infants with TCS may experience feeding difficulties, requiring specialized care and special feeding techniques.

Despite this great challenge, Siarif Ali Surja was a symbol of strength and endurance for his family. He remained steadfast in his love and devotion to his son Anuar and the rest of his family.

Despite limited financial resources, he tirelessly sought the best medical care for Anuar, even traveling long distances to the best specialists who could provide the necessary treatment and support.

Driven by his family's unique ordeal, Siarif Ali Surja Manurung became a public advocate for raising awareness of Treacher Collins Syndrome in Indonesia. He embarked on a mission to dispel myths and misconceptions about the disorder, asking the community to embrace those affected by rare health conditions with compassion and understanding.

Fundraisers, medical missions and support groups were organized to help the Manurung family and other families in similar situations deal with the challenges they faced. Despite the rarity and complexity of Treacher Collins Syndrome, the medical community remains hopeful for advances in research and possible treatments./ Adapted from CNA

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