China’s “folded man” Li Hua has a rare condition that left him with a severely deformed spine. In the first of a three-part series, we look at what life was like for Li before a team of doctors in Shenzhen helped him to stand straight again.
On an autumn morning in rural Hunan province, a villager sits outside his home soaking up the sunshine. After a while the 47-year-old slowly stands up and makes his way inside with the aid of a walking frame. He eases himself onto a seat by the counter and scrolls through the news on his phone.
It may sound pretty ordinary, but for Li Hua all of this has been impossible for years.
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Li has an autoimmune disease called ankylosing spondylitis that started when he was 18. It can cause bones to fuse, making the spine curve forward. His condition worsened over time until he was completely bent over, with three parts of his body “connected” – his chin to his chest, his breastbone to his pubic bone, and his face to his thighs.
Eventually it got so bad that he could no longer straighten his body, he could not raise his head, and he could not lie down flat. Li relied on his mother for round-the-clock care.
Last year, everything changed after he underwent four complicated operations at Shenzhen University General Hospital – the first time this surgery has been done successfully in China.
Li now has 20 pins in his body and cannot move his neck, and still needs his mother’s help to lie down and get out of bed, to dress and go to the toilet.
Now I can walk slowly with the walking frame … I can hold a bowl and eat like anyone else, sitting at the table. I’m happy – I have hope
But he says his situation has improved dramatically, after he had pretty much given up on being able to stand straight again.
“I’ve been doing the rehabilitation exercises at home in the past few months. Now I can walk slowly with the walking frame, go to the sink, brush my teeth and wash my face. I can hold a bowl and eat like anyone else, sitting at the table,” Li said. “I’m happy – I have hope.”
Born into a rural family in the town of Panshi, in Qiyang county, Li’s father worked at a military factory in a nearby city while his mother was a cadre on the local village committee. He has two brothers.
After he finished secondary school, Li was preparing to leave the county and find work in a city, like many others his age. But then the pain started – first in his feet and then in his legs and waist.
His plan was put on hold. Doctors told him it was arthritis, prescribing painkillers and anti-inflammatories to make him more comfortable.
It was debilitating, and over the years his condition deteriorated. When he was 27, Li’s neck had stiffened into a bent position and within two years he was unable to lift his head. His upper body gradually folded onto his lower limbs until, by the age of 40, his face was almost touching his thighs.
Li managed to walk by using one hand to push a small wooden bench along the ground and holding a stick for support with the other.
To eat, he sat on a chair or his bed and his mother positioned a bowl for him to reach. But his body was so severely deformed that his digestive system had been damaged, meaning he could only have two simple meals a day. He used a straw to rinse his mouth when he brushed his teeth. His mother dressed him, but it was difficult.
Over the years his mother, Tang Dongchen, took her son to see numerous doctors both in and outside the province. None were able to help beyond giving him drugs to treat the pain – until 2017, when they tried a hospital in Chengdu, Sichuan.
Finally Li was given a diagnosis: ankylosing spondylitis. But he was told his condition was so severe that it would be too risky to operate. The Chengdu doctors told him to go home.
“I wasn’t going to give up on my son,” said Tang, now 71. “I gave birth to him, so I had to try my best to find a way to make him better. Otherwise, when I die, who will look after him?”
Li was also determined not to give up.
“I’ve got this disease and I felt helpless,” Li said. “There was no choice, I just had to keep looking for any potential cure.”
He used his phone to search online, eventually coming across Tao Huiren, head of spinal surgery at the Shenzhen hospital, in June 2019. Tao agreed to see if there was anything he could do for Li.
It was risky and challenging, but in the second half of last year Li underwent surgery to break and reconstruct several of his bones. After four operations he spent another six months in the hospital’s rehab unit. And in June this year, he finally returned home to his village.
“Everyone from our street came to the house to see if Li Hua was really unfolded – there were dozens of people crowded into our house,” Tang said. “They said they could hardly believe what they were seeing, that this was a miracle. They said it was like the doctors had performed magic.”
Li has now settled into a routine of physiotherapy, he plays the harmonica and has taken up calligraphy again – something he used to enjoy before his condition became severe. His parents also help him to run a small tobacco stand in the village.
Elderly villagers also come to Li for help with their mobile phones since most other young people have left the area to find work in the cities. And some come to have their fortunes told.
“I’ve read some books on this and I’ve done it for several neighbours. I make calculations based on a person’s birthdate but I don’t do it for many people because it’s mentally exhausting,” Li said. “For me, according to my calculation, I was in for some good luck last year. I think that’s come true.”
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This article China’s ‘folded man’ finds happiness and hope after life-changing surgery first appeared on South China Morning Post