At 10 pm, Tang Dafeng started her livestream on Douyin, the Chinese version of TikTok, where she greeted her audience and shared the story of her three-year-old daughter who was diagnosed with Rett syndrome two years ago. This rare disorder is often unheard of, leaving many families feeling isolated in their struggles. However, Tang and other mothers of daughters with Rett syndrome are using Douyin to share their stories, connect with others in similar situations, and receive much-needed support.
Through the platform, mothers like Tang are reaching out to the world to create more awareness about Rett syndrome. They are sharing personal accounts of their children’s daily battles with the disorder, bringing more attention to the disease and helping families in need. As a result, Douyin has become an important platform for those affected by Rett syndrome.
Rett syndrome is a genetic neurological and developmental disorder that affects brain development, particularly in the areas of speech, purposeful hand use, and coordination. Although individuals with Rett syndrome understand more than they can communicate, they struggle with expressing themselves, making it difficult for them to communicate their needs and emotions.
Primarily affecting girls, Rett syndrome is first recognized in infancy. According to statistics, only one in every 10,000 to 15,000 girls are born with this disorder, making it rare and often undiagnosed. However, through the stories shared on Douyin, more people are becoming aware of Rett syndrome, leading to earlier diagnoses and access to vital support services.
Tang and other mothers of daughters with Rett syndrome are using Douyin to create a community where they can connect with others who understand their experiences. Through the platform, they share their struggles, their triumphs, and their hopes for their children’s futures. This community has become a source of strength for those affected by Rett syndrome, providing a space for them to feel heard and supported.
Douyin has become a powerful tool for creating awareness about Rett syndrome and connecting families in need with the resources they require. By sharing their stories on the platform, mothers like Tang are helping to break down the isolation and stigma that can often accompany rare disorders. They are fostering a sense of community and hope for families affected by Rett syndrome, reminding them that they are not alone.
In 1966, Austrian medic Andreas Rett first described Rett syndrome, a rare neurological and developmental disorder. It was not until 1988 when the first case of Rett syndrome was reported by Peking University First Hospital in China. Since then, Rett syndrome has become an increasingly studied disorder in China, with experts like Bao Xinhua dedicating their careers to researching and diagnosing the condition.
Bao Xinhua, an expert in pediatric neurology at Peking University First Hospital, became interested in Rett syndrome during her doctoral studies in 1991. She was under the guidance of Professor Wu Xiru, who was the first to diagnose Rett syndrome in China. Since then, Bao has become a leading figure in the diagnosis and treatment of Rett syndrome, diagnosing about five cases per month on average.
According to Bao, children with Rett syndrome are often misdiagnosed with brain dysplasia and autism before receiving a proper diagnosis. This highlights the importance of raising awareness about Rett syndrome in China and improving access to specialized diagnostic tools and services.
Tang’s daughter, Zhizhi, is one of Bao’s patients. After noticing signs of autism and degradation in hand function and language in her daughter, Tang took her to a hospital in Beijing for examinations. However, the results showed that everything was fine with her daughter. It was not until later that Zhizhi was properly diagnosed with Rett syndrome, demonstrating the need for increased awareness and understanding of this disorder in China.
Bao and other experts are working to improve the diagnosis and treatment of Rett syndrome in China. They are advocating for more specialized training for doctors and researchers, as well as increased funding for research into the disorder. With greater awareness and access to resources, families affected by Rett syndrome in China can receive the support they need to manage the challenges of this rare disorder.
The story of Tang and her daughter highlights the importance of early diagnosis and specialized care for individuals with Rett syndrome in China. Through the work of experts like Bao Xinhua and others, more people are becoming aware of this rare disorder, leading to earlier diagnoses and access to vital support services. With continued research and advocacy efforts, the outlook for those affected by Rett syndrome in China is becoming brighter.
Tang’s world was turned upside down when a father in a WeChat group for parents of autistic children suggested that her daughter, Zhizhi, might have Rett syndrome and added that this meant she wouldn’t live long. The suggestion left Tang trembling and unsure of what to do next.
On March 9, 2021, Tang took 18-month-old Zhizhi to Bao’s clinic and reserved a genetic test for her. A month later, Tang received the result of the report, which finally confirmed that Zhizhi had Rett syndrome. This was a difficult time for Tang and her family, as they came to terms with the diagnosis and what it meant for their daughter’s future.
After Zhizhi initially showed symptoms of Rett syndrome, Tang quit her job in Beijing and the family moved to Cangzhou, Tang’s husband’s hometown in North China’s Hebei province. The transition from office worker to a stay-at-home mother, let alone the mother of a child with special needs, was challenging for Tang.
Despite the challenges, Tang decided to share her knowledge about Rett syndrome and her daughter’s daily rehabilitation training on Xiaohongshu, China’s lifestyle-focused social media platform. She established an account and began answering questions for parents who suspected their children might have Rett syndrome. Tang also accepts interview requests from media organizations and college researchers.
Through her social media presence, Tang is raising awareness about Rett syndrome and providing a support network for other parents in similar situations. Her willingness to share her story and experiences is inspiring others to seek out the help they need for their children.
Tang’s journey highlights the importance of early diagnosis and access to specialized care for individuals with Rett syndrome. By sharing her experiences and knowledge, Tang is helping to break down stigmas and raise awareness about this rare disorder in China.
Although the diagnosis of Rett syndrome is challenging, Tang’s story demonstrates the importance of seeking out specialized care and support services for those affected by the disorder. Her willingness to share her story and experiences is a powerful reminder that no one should have to face this alone.
Tang’s advocacy efforts on social media are also shedding light on the need for increased resources and funding for research into Rett syndrome. With greater awareness and access to support services, families affected by Rett syndrome in China can receive the care and assistance they need to manage the challenges of this rare disorder.
Tang’s story is one of courage, resilience, and determination in the face of adversity. Through her advocacy efforts and willingness to share her experiences, she is making a positive impact in the lives of many families affected by Rett syndrome in China.
Wang Nan is the mother of two 4-year-old twins who were diagnosed with Rett syndrome when they were just 15 months old. Rett syndrome is a rare genetic disorder that affects brain development, resulting in severe intellectual and physical disabilities. The rehabilitation cost for both of Wang’s children is between 80,000 to 100,000 yuan ($11,500-14,400) per year. However, there are currently no rehabilitation institutions in China that are exclusively set up for children with Rett syndrome. As a result, her twins are receiving treatment together with people diagnosed with autism.
While there are no drugs on the market globally to treat Rett syndrome, families like the Tangs and the Wangs are actively seeking solutions. They persist in communicating on social media, sharing information about this rare syndrome with the public. Despite initial fears of discrimination, Tang has come to appreciate the value of her daughter as a child with a rare disease and the value of her family as caregivers.
Rare diseases can be difficult to diagnose and treat, which poses a significant public health problem globally. In recent years, China has increased its investment in medicine and health. There are now more than 4,800 prenatal screening institutions and some 500 prenatal diagnostic institutions nationwide. Additionally, authorities have cut value-added tax on imports and domestic production of drugs to treat rare diseases and illnesses. There has also been an effort to increase the number of such treatments included in China’s medical insurance catalog.
One positive development in this area has been the State bulk-procurement program that began on Jan 1, 2022. This program has led to a significant reduction in the cost of Nusinersen, a medicine used to treat spinal muscular atrophy, a rare neuromuscular disorder. The cost of a single jab of the medicine has fallen from 700,000 yuan to 33,000 yuan in China. Additionally, national health insurance will cover many such expenses.
The news of the bulk-procurement program has given families like the Tangs and the Wangs great confidence. Zhizhi can now receive living and rehabilitation subsidies from the government, which has helped to alleviate some of the financial burdens associated with caring for a child with a rare disease. There is hope that with continued investment and efforts to increase awareness, families affected by rare diseases will receive the support they need.
Despite these positive developments, challenges remain. There is still a need for more specialized rehabilitation institutions that cater specifically to children with Rett syndrome. Additionally, there is a need for greater awareness and understanding of rare diseases among the general public. Families like the Tangs and the Wangs continue to share their experiences and knowledge, hoping to increase public understanding of these conditions.
While the challenges are significant, there is hope that continued investment and effort will lead to better outcomes for families affected by rare diseases. The Tangs and the Wangs are just two examples of the resilience and determination shown by families affected by rare diseases, who continue to fight for the care and support their loved ones need. As we continue to learn more about these conditions and the challenges they pose, we must work together to find solutions and provide the support that families need.