A family of 6 in North Sumatra, Indonesia, are living with a rare condition that causes their faces to change shape.
Out of the six children of the Manurung family, four of them are living with an undiagnosed and incredibly rare facial condition.
Suyra told YouTube channel, Truly in their series Born Different, “The fact is, our faces they have changed shape but we accept it and just live with it. In my opinion, growing up with this condition made me feel inferior. But now, I don’t feel like that anymore.”
It is believed that they are suffering from a rare condition called Parry-Romberg Syndrome.
Parry-Romberg syndrome, also called Romberg syndrome or progressive facial hemiatrophy, is a condition where the tissue of one side of the face gradually wastes away. Over time, the soft tissue (muscle and fat) gradually shrinks, the facial bones may change, and the skin may become thin.
Despite many suggesting the family had been cursed, they have realised their condition must be genetic, as their father is also affected.
The family are yet to visit a doctor for any diagnosis and, due to the unusual nature of their looks, they have had to get used to people reacting negatively to their appearance.
According to Tiur who is the only one of the siblings with a normal face, she said people ask her why she’s different from her siblings. She attributes their condition to taking after their father who also has the condition, while she’s more like her late mother.
On why they’re yet to check with the doctor on what their condition may be, Tiur said for now her siblings condition has no effect on their well-being, hence they see no need to see the doctor.
Watch the full documentary here: https://youtu.be/qJ8COwoW5Rk
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