Perseverance of man with hemophilia inspires others

Despite standing 1.7 meters tall, Xiao Tan, from Changsha in Hunan province, tries to maintain a weight of around 40 kilograms.

This is not because he has an eating disorder, but because he has a rare condition known as hemophilia, which means his blood doesn't possess the needed proteins for clotting.

While a small cut is not an issue for most people, for those with hemophilia it can be potentially life-threatening.

Tan, who wishes to only use his family name for privacy reasons, keeps his weight so low to limit the amount of medicine he requires, as his treatment is expensive despite being partially covered by insurance.

It is estimated that the prevalence of hemophilia in China is about 3.6 per 100,000 people.

Despite some misunderstanding among some members of the community, hemophilia is not contagious, and is usually the result of an inherited mutated gene.

The 25-year-old was diagnosed with the condition when he was 3 years old.

However, back then Tan's family, living in Chaling county at the time, didn't have the financial means or medical knowledge to get him injected with clotting factor — blood plasma involved in the clotting process.

Therefore, whenever there was internal bleeding, he could only lie in bed, suffering great pain and waiting for the bleeding to stop.

"I'm told the pain can be even worse than when women give birth. And if the bleeding is not stopped, it means severe pain for a long time," he said.

Upon being diagnosed with hemophilia, his father blamed his mother as the mutation for the condition is usually passed from mother to son through the X chromosome.

He would argue with her and even physically beat her. After a while, his father left the family.

Tan began taking traditional Chinese medicine for the disease at an early age.

Whenever there was severe pain, his mother would put a hot towel on his joints and massage him to alleviate the pain.

When he was 10 years old, he almost died from severe internal bleeding.

The local TV station and newspaper ran stories about his plight, and many people donated money to help him get treatment and clotting factor from a hospital in Changsha.

"I have used all kinds of medicine, borrowed some from fellow patients with the condition and even used clotting factor that was out of date," he said.

"When there is bleeding, any medicine can be lifesaving, and expired medicine or even those for clinical trials are better than no medicine."

Since then, he has had clotting factor replacement therapy to treat bleeding episodes. Since 2022, the replacement therapy has been given regularly at home to help prevent bleeding episodes.

Tan graduated from the Hunan University of Chinese Medicine with a degree in acupuncture and massage in 2022.

Medical insurance in Changsha covers up to 300,000 yuan ($41,468) annually for medical bills associated with hemophilia.

He said he chose to study medicine because he was inspired by his many experiences with doctors over the years. He started documenting his daily life on social media platform Douyin, the Chinese version of TikTok, without revealing his condition at first.

In April 2022, due to a particularly painful period of constant bleeding, he posted a video on Douyin revealing his condition and that he feared it might take his life.

The post provoked an outpouring of compassion and encouragement, with some commenters sharing their own stories of their struggles with different illnesses.

"I was a very timid person and did not want to tell other people about my illness, yet the warm words from unknown strangers online were like sunlight shining through the darkness, helping me get through the dark days," he said.

Since then, Tan has been more open about telling his stories of battling the disease.

He has posted videos of him injecting himself with plasma and receiving treatment from doctors.

Many of his fans are also hemophilia patients or have family members with the condition. Tan gives suggestions on getting treatment while also offering them psychological support.

Due to the excessive internal bleeding he has experienced over the years, Tan's knees, ankles and pelvis have all been damaged.

Despite this, he was still able to travel to the Xizang autonomous region by himself in April.

"I have been bedridden for most of my life, and I really wanted to visit Xizang. The view was so mesmerizing and even better than I have seen on TV and online," he said.

"Although my legs hurt every step I take, I still want to encourage my fans so that they can also travel and see the bigger world if they take regular preventive therapy."

Tan now has more than 290,000 followers on Douyin, but despite his family being in debt to cover his medical bills, he said he is reluctant to monetize his account.

"There are many possible emergencies accompanying the disease, and someday I might die if there is a hemorrhage from sudden injuries, but I still want people around me and my fans to be happy every day," he said.

"I do not hate or blame the disease. I have accepted it. It has become a part of me."

Someday, there might be a cure for the disease, he said. He is still hopeful, as people can move forward when there is hope.

"If it's possible, I want people to know me not because I have the disease. And a healthy me can become a doctor to save others from disease."

Ma Danyi, 19, from Changshu, Jiangsu province, is a fan of Tan on Douyin.

She said Tan's videos have helped her greatly with her depression and bipolar disorder.

"I like him because although he is in a dire place, he still helps others find light in life," Ma said. "I want him to not lose hope as he is in a better condition than before."

Wen Ying, 40, from Taizhou, Zhejiang province, is another fan of Tan on Douyin.

She came across his videos in September and felt compassion for him. She said she first learned about the disease from his videos and livestreams.

"He is a very nice person and lives his life positively despite so much suffering. He deserves to get better and be happier," Wen said.