Freak Show Family (3/12)

The documentary strand exploring remarkable tales of human experience continues. This edition features a group of Indonesian circus performers whose shocking medical conditions made them the star attraction in a travelling freak show. With the show now disbanded, the performers have returned to their respective villages where they face the prospect of finding work outside the circus. ‘Extraordinary People’ follows a British surgeon as he travels to Indonesia to see if he can help the people combat their conditions.

In Indonesia, a close-knit group of circus performers known as ‘the Clan’ has long been the main attraction at a travelling freak show. Esih, Sahi, Sakim and Mamat all have extreme physical conditions that have never been diagnosed, but the performers have managed to earn a living thanks to the morbid fascination of the public. However, the circus has now gone out of business and the four performers have been forced to leave life on the road and return to their villages. Sahi is trying his luck at woodcutting, but says the work irritates his skin, which is covered in bubble-like tumours. “At least I never went hungry when I was part of the freak show,” he says. Esih, meanwhile, is unable to work at all because of an enormous growth on her face. “I have no life,” she says.

Having heard news of the Clan’s plight, British craniomaxillofacial surgeon David Koppel is keen to help. So far, all he has seen of the Clan is a video of their act. “The whole thing is distasteful,” he says. “It’s exploitation of their appearance.” Mr Koppel hopes that by flying to Indonesia, he might offer the group members diagnoses, and provide them with treatment that could turn their lives around.

Before Koppel arrives in Bandung, the four performers meet at Esih’s house. It is the first time the friends have seen each other in many months, and it is an emotional reunion. In fact, the situation proves too much for Esih, so Sahi, Sakim and Mamat head to a nearby hostel for the night. The next day, Mr Koppel is on his way to Bandung when he receives some worrying news. Esih has collapsed and must be taken to a local hospital for treatment, meaning she will not have the benefit of Mr Koppel’s expertise this time around.

Once he has met up with the remaining three, Mr Koppel sets about examining his patients and has soon come up with some diagnoses. Sahi and Sakim are both suffering from neurofibromatosis (Nf) – a genetic disorder that leads to the development of soft, fatty tumours on nerve tissue all over the body. Sakim’s tumours are mainly on the face, where one particularly large one has rendered his nose saggy and trunk-like. Sahi’s tumours exist all over his body. “It is not possible to remove all of these lumps,” says Mr Koppel, “but it is possible to remove several of them.” Mamat’s dry, scaly skin condition is outside Mr Koppel’s area of expertise, so the doctor takes his patients to Jakarta to enlist further medical help.

After meeting with dermatologists and surgeons at Jakarta’s teaching hospital, Mr Koppel gets his patients an appointment with the experts for the following day. “That’s a good result for the people involved,” he says. Delighted with the support the local doctors have offered, Mr Koppel visits the Clan members at their hotel to deliver the good news. Sakim is uncomfortable with the prospect of being examined by the doctors, but agrees to join the others. Mamat, on the other hand, wants to go immediately. “The sooner we go, the sooner we get some understanding of our conditions,” he says.

At the hospital, consultant dermatologist Eddie Carter recognises Mamat’s skin condition and is able to prescribe medication that will relieve his symptoms. After seeing the local surgeons, Sahi is booked in for a treatment to remove the worst of his tumours. In just six week’s time, Sahi will return to Jakarta to undergo an operation that could change his life. However, Sakim’s doubts get the better of him and he decides to return home to consult his family before going ahead with any treatment. “I think it’s a step in the right direction,” concludes Mr Koppel. Unfortunately, Mr Koppel’s visit came too late to help Esih, who died of undiagnosed breast cancer in January.

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