JIANG Yunsheng has Tourettes syndrome, a neurological disorder characterized by rapid and repetitive involuntary movements and vocalizations called tics.

Though not degenerative, the syndrome can cause social stigmatization for sufferers because those around them may think they are mentally unstable, and best avoided.

Jiang, 32, a Liaoning Province native who used to work as a graphic designer, is making a documentary film about the daily lives of Tourettes patients to show that the disorder is not contagious and that it affects neither intelligence nor life expectancy.

He first called his documentary “Angels Making Funny Faces,” but later changed it to “The Happiness of Tourettes Syndrome.” The film is in post-production and is expected to be released in March.

 “You cannot wait for others to help you ­­­­— neither government or nonprofit groups,” Jiang said of the project. “If we want to change public perceptions, we have to do it ourselves.”

There is no official estimate of the number of people with Tourettes in China’s mainland, but Jiang said he reckons the figure is more than 4 million, extrapolating from figures available in Taiwan. There is also no official organization representing Tourettes patients on the mainland.

Jiang, who came to Shanghai in 2006, said his film will feature three patients: an 11-year-old boy in Hangzhou, an 18-year-old girl in Guangzhou and a 36-year-old floral artist from Taiwan. It will also contain a section showing how to care for children with Tourettes.

The disorder is named after George Gilles de la Tourette, a French neurologist who first described the condition in an 86-year-old noblewoman in 1885.

Jiang said he started having the symptoms when he was nine, but it was 18 years before he learned what the condition was.

“I first heard the term at a party in 2010 in Shanghai,” said Jiang. “An American guy who was there tapped me on the shoulder and asked me if I had Tourettes."

The American, who also had a friend with Tourettes, directed Jiang to an online explanation of the condition. Jiang spent the next few days researching the syndrome.

“Almost every description of the condition matched my symptoms,” he said. “I had been living with it for years and years without knowing what it was.”

Somehow, knowing helped. Jiang’s research showed that the syndrome was not widely recognized in China — neither by the public, by patients or by families. The tics can manifest themselves in any number of involuntary movements: eye blinking, coughing, throat clearing, sniffling, funny faces or verbal noises.

“Some Chinese parents consider it embarrassing when their children suffer tics in public and give them a spanking to make them stop,” Jiang said. “A parent once told me not to call it a ‘syndrome,’ suggesting it be called a ‘bad habit.’ But it isn’t a habit. You can correct a habit but you can’t just decide to get rid of Tourettes symptoms.”

In November 2014, Jiang quit his job and made a video clip called “Tourettes Hero Needed” to find subjects for his documentary. He turned to crowdfunding and raised 58,002 yuan (US$8,975) to finance the filmmaking.

During research and filming, Jiang talked to many patients and their families.

His documentary features a family in Hangzhou with two children suffering Tourettes. The mother had to quit her job to take care of her sons.

At first, she told him, the syndrome was hard to endure, but the more she learned about the condition, the easier it became to deal with her children.

“There were several times I cried as I was behind the camera filming,” Jiang said because the young brothers reminded him of his own childhood.

He recalled the beatings his father used to give him, thinking he could get the tics to stop. His parents sought remedies in acupuncture and traditional Chinese medicine, but none worked so they gave up.

After watching Jiang’s film, his father apologized to him.

“It’s not their fault,” Jiang said. “They were ignorant of the problem.”

Du Yasong, child psychiatrist with the Shanghai Mental Health Center, told Shanghai Daily the tics tend to be the worst when sufferers are under strain. Sometimes, the conditions ease as sufferers get older. So far, no cure has been found.

“The earlier the treatment, the better,” said Du. “Parents of Tourettes children should try to provide as relaxed an environment as possible to reduce stress and the severity of tics.”

Despite the fact that the condition is slowly becoming better known, most Tourettes patients still face public ostracization.

Jiang recalled suffering tics when he was once in the changing room at a public pool. A man there asked him if there was a frog croaking.

“I told him it was me and explained that I had Tourettes,” Jiang said.

The man apologized, saying he didn’t know about the condition.

In Jiang’s documentary, there’s a 18-year-old Guangzhou girl who suffered tics frequently. He followed the girl as she walked about, recording the stares that followed as she passed other people.

“At that age, can you imagine the embarrassment she must feel?” Jiang said.

The film captures her bravery and tolerance. She would often stop to tell people about the condition, Jiang said.

It’s a similar experience shared by many Tourettes patients.

“When I had tics on the subway, some passengers would move to other seats,” said James Wang, a 30-year-old Tourettes sufferer in Shanghai. “They worried that I might have mental issues or might hurt them.”

He said that he usually could suppress the tics to some extent, unless when he was hungry or tired.

Wang said he first started having tics when he was about 11. He was given medicine for hyperactivity but it didn’t really do much good so he abandoned it four years later.

Du said that many Tourettes patients also suffer from obsessive-compulsive disorders and depression because of their unhappy relationships with others.

“Tourettes itself is not harmful,” the doctor said, “but the complications brought on by Tourettes can be distressing. The environment they live in is more important than any treatment we can give them.”

Wang is now a successful public speaking trainer in the city.

“I find I can do my job better than some ordinary people,” Wang said. “Because I tend to move around more than others, I decided to move about on stage and use my condition to my advantage. I actually feel more confident and relaxed on stage.”

Jiang said he didn’t want his film to show Tourettes patients as a miserable group of people. Rather, he wanted it to be upbeat, educational and inspirational.