Published in Reveal Magazine, UK
WHEN Supatra stepped into her new classroom the other children gasped. Some started crying, others just stared. It’s a reaction Supatra may have to live with all her life.
Supatra Sasuphan, nicknamed Nat, has an incredibly rare medical condition that means she is covered in hair. Some people call her ‘monkey face’ or ‘the baby bear’ but brave Supatra is learning to deal with the stares and jibes. Her mother Sompol remembers the day her daughter first went to school.
Talking to Reveal from her home in Bangkok, Thailand, Sompol said: “Everyone in the whole school came to look at her. When she went into the classroom the other children were scared. Some started crying and they had to move a few to another room. “The teachers explained about her condition and after a month or so the other children got used to it and she made friends.”
Supatra’s appearance is undeniably shocking, and every day she must endure the gossips and taunts. Many assume she would be embarrassed and withdrawn by all the attention. But Supatra is a confident and cheeky seven-year-old girl who refuses to let her mysterious condition ruin her life. Sompol, like every other mother, thinks her child is special. However, Supatra is truly extraordinary as she has a condition that affects one in ten billion people.
Supatra has Ambras Syndrome, a genetic abnormality that produces excessive hair. A century ago she would have been considered a freak and probably put in a travelling sideshow and named ‘wolf-girl’ or ‘werewolf’. Today such cruel comments still exist, but Supatra seems immune to them. She strokes her silky, feline-like hair and plays happily with her sister, Sukanya, 11, who does not have the condition.
Sompol said: “She never shows signs of being upset, despite all the stares. This morning as we rode on a tuk-tuk (a traditional Thai form of transport) we heard some people saying ‘is your daughter wearing a mask?’
“When she was a baby people would always stare, sometimes people wouldn’t walk near her. One day I was carrying her to the shops. Someone came up to me and asked ‘are you holding a monkey?’ “It’s hurtful but we tell Supatra that she is extremely special. She’s possibly the only person in the world like this and we love her whatever she looks like.”
Supatra was born at Siriraj Hospital in Bangkok, Thailand, on August 5, 1999, weighing a healthy 3.2 kilograms.
Sompol, 35, said: “I had a Caesarean delivery so I didn’t see her for the first two days. The doctors told me ‘your daughter is fine but she is very hairy’. When I saw her for the first time I was amazed but I still loved her very much. I felt sorry for her.”
Supatra was born with a nasal defect so spent the first nine months of her life in hospital as doctors helped her to breathe normally. Once her breathing difficulties – which were unrelated to Ambras Syndrome – were cured, doctors tried to figure out why she was covered in hair.
Sompol said: “When Supatra was two years old she had laser treatment to remove the hair. She had a bad reaction, she was bruised and her eyes were red. When the hair grew again it was even thicker.”
Every few weeks Sompol trims her daughter’s hair with scissors, but it soon returns, threatening to completely engulf Supatra’s face. Supatra’s mother and father Samroeng, 35, live in a small apartment in central Bangkok and make Buddhist amulets for a living. They try to do all they can to ensure Supatra has a normal childhood.
Sompol said: “We talk to her and make sure she is happy with herself. We tell her she just has a problem with her hair, but many other people are disabled and are worse off.
“Supatra never feels sorry for herself. She looks in the mirror and brushes her hair every day.” Supatra loves going to school and now has plenty of friends. As she showed Reveal photographs of herself as a cheerleader she said: “I like school and I like to play. I play hide and seek with my friends – and I always win!
“I like to run too and I think I’m the second-fastest in my school. I love going to school and I really like it when I can draw and do hand-writing.”
Supatra goes to Ratchaboptich Kindergarten in Bangkok’s Chinatown area. Her class teacher Buangorn Kuharoung smiled as she said: “She is naughty but very enthusiastic and a little bit hyper. She likes acting and dancing and is a very confident student. “She joins in with all the activities and is unafraid to try new things. She is a remarkable young girl who takes things in her stride.”
Supatra is unfazed by her situation and relishes trips to hospitals to see the doctors, who give her treats every time she goes.
Doctors took DNA samples from her in a bid to understand more about Ambras Syndrome. The results seemed to show Supatra’s DNA was normal, but research is still taking place. As there are so few instances of Ambras Syndrome, little detail is known about it, but doctors have told Supatra’s parents that her general health will not be affected.
Hypertrichosis lanuginosa, or Ambras Syndrome, is a genetic condition that affects less than one person in ten billion. Less than 50 cases have ever been documented. No known treatment exists and information on the condition is scarce. Some experts believe the extra hair is due to a problem with chromosome eight, but no-one is certain. Supatra may get stared at on a daily basis, but at least she is not like those who had the condition in the past.
Petrus Gonzales was born in the Canary Isles in 1556. Local legend told of a race of hairy savages in the area, so when Petrus was born covered in hair he was lucky not to be killed by superstitious villagers. Luckily for Petrus, King Henri II of France ordered him to be taken to Paris, where the young boy was studied. When he married, his children were also hirsute, and became a major curiosity all around Europe. The family was dubbed the ‘Family of Ambras’ after a nearby castle in Austria. Their peculiar portraits still hang on the castle walls.
Today there may not be a cure but there is plenty of help for Supatra. She may have to spend her life constantly shaving her excess hair, although there are other more extreme treatments. She could undergo electrolysis, which is a painful and expensive way of getting rid of the hair. Or she could have laser treatment, which can leave scarring. For now, Supatra is not worried about her appearance, but her parents are concerned about what may happen when she gets older.
Sompol said: “Right now we aren’t worried because everyone knows her, but when she moves to another school she will have to start all over again and deal with the stares. We are worried about how she will deal with it when she’s a teenager.” She may return for more laser treatment in a few years, when she is old enough to cope with the anaesthetic needed for the procedure.
Her parents are hoping the hair will disappear naturally, which has happened in some other cases. Supatra seems unconcerned though and has her own plans for the future. “I am going to be a teacher, I want to teach children when I’m older,” she said.