Wang Zichao (R) shoots a documentary about a patient suffering from hereditary epidermolysis bullosa in Changzhi City, north China's Shanxi Province, Oct. 12, 2024. (Xinhua)
by Xinhua writers Wang Yihan, Huang Zechen, Zhao Jiasong
BEIJING, Feb. 28 (Xinhua) -- With one blistered hand gripping the video camera, Wang Zichao pressed the record button with the curled fingers of his other hand. He was capturing the story of another patient with a rare disease, which mirrored his own.
The 37-year-old, who hails from the city of Nantong in east China's Jiangsu Province, was born with hereditary epidermolysis bullosa, a rare genetic disorder that causes the skin to be extremely fragile and prone to blistering, even with the slightest friction or trauma.
Experts revealed that about 10 people among every one million worldwide suffer from this baffling disease. Babies born with it are often referred to as "butterfly children" because their skins are as fragile as a butterfly's wings.
"When I was born, half of my leg had no skin, just bloody flesh. We only learned about this disease after my father took me to a hospital in Shanghai," Wang told Xinhua during an interview.
"It is a terminal illness," Wang explained. For his entire life to date, he has endured significant skin problems and other complications, such as the loss of all his teeth and damage to his esophagus. Now, he relies on medical dressings to protect his skin and alleviate his constant pain.
Unable to work in a traditional job due to his condition, Wang turned to writing -- publishing articles on his official social media accounts. In 2021, he began recording his battle with this illness on Chinese social media platforms.
"By sharing my life, I hope to raise awareness about the disease and call for more care and compassion from society," Wang said, recalling that as a child, he was often subjected to curious and uneasy glances, with many people avoiding him out of fear.
As his own life story began to feel repetitive, Wang decided to film the stories of other patients like himself from across the country, giving them a platform and highlighting their experiences.
Since 2023, he has traveled to 32 Chinese cities to document the stories of 38 fellow patients, with ages ranging from five months to 38 years. To date, 33 documentaries have been published online, thanks to Wang's determined efforts.
At the end of 2024, a crying Wang told his audience in a video that he would publish a documentary about an 18-year-old patient, also a loyal fan of his social media accounts, who had died a day earlier.
The video attracted much attention and many moved by the story contacted the deceased patient's family to offer condolences and financial support.
Regarding his video skills, Wang revealed that he had taught himself the necessary abilities via research online, while he does the shooting and editing work by himself, with support from his wife and parents.
Featuring authenticity and warmth, his videos soon gained popularity online and have racked up over 250 million views on various platforms, including Douyin, Bilibili and rednote. His account on Douyin, named wangzichaoren, has 223,000 followers.
Income generated by these views helps support his life and also fuels his mission to document the lives of other patients.
"My videos have brought about so many changes," Wang said. "Many patients have told me that they can be recognized as 'butterfly children,' and instead of fear and alienation, they receive care and support. Some have even received financial assistance from kindhearted individuals and organizations."
Chinese health authorities recognized hereditary epidermolysis bullosa and another 120 conditions as rare diseases in 2018. More hospitals and health institutions have contributed their efforts to improving diagnosis and treatment of rare diseases and to protect the rights of patients.
Xu Zigang, director of dermatological department at Beijing Children's Hospital, said the hospital has established a hereditary skin disease clinic to ensure the availability of long-term treatment for patients, including "butterfly children" and other rare disease sufferers.
As public awareness levels concerning this disease are still low, Xu noted that it is important for families of such patients to receive more support from society, along with the joint efforts of pharmaceutical companies and research institutions to improve treatment options.
During the interview, Wang occasionally coughed, the result of constant damage to his throat. "For me, the greatest meaning in life right now is focusing on making every video the best it can be," Wang said. ■
Wang Zichao (R) shoots a documentary about a patient suffering from hereditary epidermolysis bullosa in Taiyuan City, north China's Shanxi Province, Oct. 15, 2024. (Xinhua)
