This Family’s ‘Lizard’ Facial Features Is ‘Scary’ Reality No One Wants To Believe In — Locals Say ‘It Keeps Changing’

In a world marked by countless medical conditions, one Indonesian family’s story has captured global attention for both its rarity and resilience. The Manurung family from North Sumatra, Indonesia, has gone viral after four of six siblings were born with a rare genetic disorder that causes distinctive facial features, often misunderstood by the public as “lizard-like.”

While the description may sound fictional, the condition affecting the family is medically documented and real.

A Condition Once Mistaken for a Curse

For years, the Manurungs, who live in the village of Kedungkang, faced social stigma and isolation. Locals initially believed the family was cursed by evil spirits because of their unusual facial appearance. This belief deeply affected

the family’s mental health and social standing.

In a YouTube documentary by Truly, the family’s father addressed these misconceptions directly. “The fact is, our faces have changed shape, but we accept it and just live with it,” he said. He later revealed that the condition was inherited genetically, as he too has the syndrome.

Understanding Treacher Collins Syndrome
The Manurung siblings are affected by Treacher Collins Syndrome, a rare genetic disorder that causes permanent facial deformities. Symptoms can include fragile facial bones, underdeveloped jaw structure and abnormal gum growth. Importantly, the condition does not affect intelligence, internal organs, or life expectancy.

Medical experts stress that individuals with Treacher Collins Syndrome can lead normal, productive lives when given proper social support and acceptance.

Stigma, Struggles and Social Rejection

One of the siblings, Surya Manurung, has openly spoken about struggling to find work due to repeated rejection based on appearance. The early years were marked by discrimination and loss of confidence, as the family found themselves judged before being understood.

Over time, however, the Manurungs chose to challenge these narratives rather than retreat from them.

Social Media Turns Lives Around

The family’s journey took a dramatic turn with the rise of social media. Their honest storytelling, confidence and refusal to hide their identities helped them build a massive online presence. Today, the Manurungs boast over 300,000 YouTube subscribers and 2.3 million TikTok followers.

Their platforms now generate income while spreading awareness about rare genetic conditions and self-acceptance.

Challenging Beauty Norms Worldwide
Similar cases, such as that of Kawana, a Brazilian woman with the extremely rare Barber-Say Syndrome, show how visible genetic differences are often misunderstood. Fewer than 20 cases of Barber-Say Syndrome are known globally.