Thanks to advances in medicine, technology, and science, people living with rare conditions have the best possible chance of receiving help.
Experts worldwide continue to identify the many different conditions humans can be born with or affected by, as well familiarize themselves with what those conditions do the body, and how they can potentially be combatted.
That said, there remain some extremely rare medical conditions that haven’t been explored or even given names yet. The Manurung family, from Indonesia, are victims of one such mystery affliction – the father and four out of six siblings suffer from a truly odd and incredibly rare facial condition.
Put simply, the affected family members have seen their faces change completely over time. At the time of writing, they haven’t received any sort of diagnosis, but strive to enjoy life as much as they can.
Recently, the siblings, including son Surya, decided to present themselves to the world via social media. Today they are TikTok celebrities, giving millions of people worldwide joy through their content.
This is their incredible story…
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No matter where we come from, no matter our background, skin color, or beliefs, one of the most extraordinary things about us humans is that we are all different. Some of us have more prominent noses than others; some of us have tiny ears; some lose their hair at an early age, while others enjoy thick, wavy locks for throughout their entire lives.
In the long run, it’s our differences that make us unique. It should never be forgotten that this is something to celebrate. Most importantly, it’s crucial that we don’t judge anyone on their appearance – it has nothing to do with who we are as human beings.
Now, some people alter their appearance if they’re not happy with it. As a result, plastic surgery has become very popular in the last few decades, even though experimenting with one’s own body can be a dangerous practice. Over the years, we’ve reported on several people who have had their faces pretty much destroyed due to too much plastic surgery – or surgery performed by doctors who are in no position to be undertaking specific procedures.
One such woman had cement injected into her face. In another case, a woman was left with a giant hole in her face after undergoing plastic surgery. Luckily, they both received help to return their lives to some semblance of normality.
Even so, they can serve as examples or warnings about the dangers of actively trying to alter one’s appearance.
Of course, there are people who don’t place such emphasis on attaining any sort of perceived perfection with regards to their appearance, and with that in mind there’s a specific family we’d like to highlight.
The Manurung family, from Indonesia, are for the most part like any other. Where they differ from the norm, however, is that several of their family members live with a rare condition that has caused their faces to quite literally change shape.
The Manurung family – mysterious facial condition
What exactly has happened to the Manurung family was for a long time – and still is, to an extent – a mystery.
There are several theories as to why their faces have changed over the years. But most importantly, they have accepted themselves for who they are, which we think is an admirable attitude to take and an inspiring reminder of how we should approach life. It’s especially poignant today, where appearances and ‘likes’ on social media have taken over many people’s daily lives.
In North Sumatra, Indonesia, live the Manurung family, who have become role models to millions worldwide. Mother Mardiah and father Syarifudin have six siblings, but only two were born without the aforementioned rare condition.
Sisters Sri, Mairani, Tiur, and son Surya appeared on camera for the YouTube channel Truly to explain more about their lives – and give insight into their daily life with a very rare and, as of now, undiagnosed facial condition which makes their faces change form.
Over the years, the children considered many theories as to why they had been affected. Finally, however, they settled on the idea that it was related to genetics.
“I always used to think about it; Why am I so different to my sisters and brother?” Tiur, the only sibling without the condition, told Truly.
“But when I got older, what I realized was that it must be genetics from our parents. My sisters and brother inherited it from my father, and I am more like my mother.”
As of September 2021, the family had not yet visited a doctor to get to the bottom of the mystery condition they were living with.
“Their condition doens’t affect their lives”
Their rare facial condition has not stopped them from living normal lives, and the family don’t seem to mind the fact that they look different from others. In fact, they’ve embraced their uniqueness.
“We think that their condition right now isn’t a problem day-to-day. If it did cause problems, like tiredness, they would go to the doctor for a check-up,” Tiur explained. “Now, their condition doesn’t affect their lives, so it’s not an issue.”
As mentioned, there’s not yet been an official diagnosis regarding the Manurung family’s condition. One guess is that they suffer from a rare condition called Parry-Romberg Syndrome.
According to the National Institute of Neurological Disorders and Stroke, 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, muscles and fat (soft tissue) gradually shrink, and the facial bones may change.
The skin and soft facial tissue of a person living with Parry-Romberg syndrome break down over time. The rare condition can also affect the brain and cause neurological problems, as well as impact a sufferer’s jaw and eyes.
The National Institute of Neurological Disorders and Stroke further describes that the condition usually begins on the left side of the face – the upper lip or below the nose, for example – before spreading towards the ear, eye, and neck.
The Manurung family – possible conditions
According to the institute, neurological symptoms can include weakness on one side of the body, seizures, facial pain, migraine or other headache, vision problems, and brain atrophy.
“Currently, there is no cure or treatment to slow or prevent the deterioration caused by Parry-Romberg syndrome. Surgery may be needed to rebuild the damaged tissue and skin, and some cases may need a bone or muscle transplant,” the National Institute of Neurological Disorders and Stroke explains.
“Immunosuppressant drugs and other medicines may help treat some neurological symptoms. Other treatment focuses on treating other symptoms.”
There is another, alternative condition the Manurung family may be suffering from: Treacher Collins Syndrome.
According to the National Library of Medicine, Treacher Collins is a genetic disorder resulting in congenital craniofacial malformation. It affects the development of bones and other tissues of the face. Signs and symptoms of the genetic disorder vary greatly; for some, it is barely visible, while for others, it can have severe implications.
People with Treacher Collins syndrome often have eyes that slant downward and a “notch in the lower eyelids” known as eyelid colomba.
A third possibility could be the so-called Barber Say Syndrome. According to the Cleveland Clinic, this is another extremely rare genetic condition. The disease is usually present from birth and causes malformations in a newborn’s body. It mainly affects their external characteristics, especially the face, with internal organs typically unaffected.
Some distinctive facial features are papery thin, fragile skin and excessive hair growth. Symptoms include:
- Widely spaced eyes.
- Outwardly turned eyelids.
- An upturned nose.
- Missing or underdeveloped eyebrows.
- A large, rounded nose.
“Our faces changed, but we accept it”
Since several family members seem to be affected by the same condition, the Manurung family has gotten used to people staring at them. Sadly, certain strangers react negatively to their appearance, but that’s nothing the family concern themselves with.
That said, the Manurungs are popular and well-liked where they live. Unfortunately, people often judge others based on appearance, but the Manurungs are lucky enough to have amazing people living around them.
“When we walk around our village, we don’t have any problems. No one makes fun of us, no one insults us in our village,” the son of the family, Surya, said.
“But if we leave here and go out of town, people who never seen us before for sure, they look surprised when they do. The fact is our faces changed, but we accept it and just live with it. We are thankful for it, it’s a gift from God. That’s how we see it.”
Tiur added: “I feel bad that they’re not like me. I have a normal life without bullying, without being mocked, without being ridiculed by others. When they feel sad because of that, I do too.”
Over the years, we’ve seen plenty of examples of people living with different conditions who choose to take their uniqueness and turn into something positive. Removing any stigma is crucial, and this is something the Manurung family strive to achieve.
The Manurung family became social media celebrities – Surya got married
When social media app TikTok grew into one of the most popular platforms in the world, Surya and his siblings decided to take a gamble. They posted several videos of themselves dancing, and their channel soon went viral.
As of April 19, 2023, Suruya Manurung has more than 2.9 million followers on TikTok, as well as in excess of 107,000 followers on Instagram. The family continue to share videos of themselves having a good time, not just to prove they’re happy despite their rare facial condition, but also to show that they are just like anyone else.
For the Manurung family, TikTok has become a way of making more money for their family.
“We went viral on TikTok,” Mardiah Manurung said. “Since then people thought we did it for pity, but that’s not true. We’ve used this as an opportunity of going viral of hoping to earn a living to raise our living standards.”
It’s been about 18 months since the Truly documentary about the Manurung family aired. Since then, it appears that Surya has taken a giant leap in his life.
According to Indonesian news outlet Tribunnews, the young man found love, marrying a beautiful woman named Shasa Puspita Dew.
The Manurung family accepts their unknown condition and seeks happiness with a positive attitude. They are indeed an inspiration to others and proof that one’s appearance really isn’t everything. It’s what’s on the inside that counts, and this family’s passion for success is truly admirable.
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