Russian photographer Yulia Taits’ portraits of albinos stunned the world. In his works, the white hair, white eyelashes and pale face of the patients were like angels in fairytales.
While Taits’ work found beauty in a condition that can be a struggle for many, the images also reminded people of numerous rare diseases suffered around the world.
Chinadp.com’s statistics in 2015 found there are 18 kinds of albinism known in China. Some lead to less or no pigment in the skin or eyes, causing patients to be injured by ultraviolet light. Severe forms can cause bleeding and heart disease, which make it dangerous to undergo surgery.
Wei Aihua, an associate doctor specializing in genetic skin problems at Beijing Tongren Hospital, said most patients with albinism are ordinary aside from their poor eyesight and pale skin. The condition slightly limits a patient’s lifespan.
Wu Yuhang, an 18-year-old girl from Jiangsu province, has albinism. Wu began studying guzheng when she was six years old. She came to Beijing at 14 to perform in Dream of Love, a troupe for musicians with disabilities. Her performance won praise, and in 2015 Wu began preparing to enter an art school although she has limited vision.
Wu is lucky to be treated like most people. But in much of China, people with albinism face serious discrimination.
Zhang Chao (pseudonym), a college student in Hangzhou, Zhejiang province who has albinism, said she seldom went outside on campus because her skin could not be exposed to the sun for too long. Zhang said she hoped to find work at a trade company in the suburbs where the rent and cost of living would be lower.
Zhang has a GPA of 3.85 and an average score above 90. She was the leader of the university’s Party department and is a nationally awarded calligrapher.
None of that experience has helped change the fact that most companies immediately reject her based on her appearance.
She is the only student in her dormitory who failed to get a job offer.
Rare Diseases in China
China Charity Federation, China Health Education Center and Tsinghua University held a seminar on rare diseases in 2010 and announced the country has more than 10 million patients suffering from rare diseases. An estimated 80 percent were genetic, with half showing signs in early childhood.
As well as albinism, there are other rare diseases, such as Marfan syndrome, whose patients have shorter upper body and longer lower body. Patients are typically nearsighted and prone to heart attacks.
About 1 in 100,000 people in China also suffer from ALS, a kind of disease that causes patients’ muscles to lose their function. Patients suffer from a lack of nutrition in their muscles and finally die due to heart and respiratory failure.
Infzm.com reported that China’s lack of legal protection for people with rare diseases has resulted in precious few social organizations that provide aid.
Genzyme Corporation, a pharmaceutical company, has been donating cerezyme, a drug for Gaucher disease, to the China Charity Federation since 1999.
Cerezyme is the only effective medicine for Gaucher disease and costs 26,500 yuan per injection. An adult patient has to spend more than 2 million yuan, which few families can afford.
In 2009, CCF told patients and families that the medicine arrived at Beijing Airport, but that the government would conduct its own examination of the donated medicine, which would take three to five months.
Huang Shangzhi, a geneticist and professor at Peking Union Medical College Hospital, said cerezyme was approved to be sold in Chinese market in 2009 after repeated tests. It was one of the first medicines for a rare disease to be greenlit in China.
Luo Xuequn, chief doctor of Children’s Department at the First Affiliated Hospital, Sun Yat-sen University, said there may be more than 1,000 Gaucher patients in China, and 135 receive donated medicine from the Genzyme Corporation.
China does not offer any health insurance or assistance to Gaucher patients.
Zhuo Yongqing, president of the Pharmaceutical Association Committee, said China needs legislative protection for people with rare diseases. Zhuo said Taiwan provides full reimbursement for the treatment of rare diseases and has a supervising committee to investigate the process.
The government should also encourage pharmaceutical organizations to develop medicines to cure rare diseases, said Zhang Xueying, director of research department at Saint Lucia Consulting.