政府新闻
罕见病患者艺术展 2024-11-18
An exhibition showcasing artistic works of rare disease patients and their families was unveiled in the city last Friday.
A total of 44 patients and their families from 48 rare disease patient groups brought 91 paintings and video works to the exhibition with the theme "Share Your Colours." Their goal is to arouse public awareness and support for people with rare diseases and their families.
A woman takes a picture of works at the exhibition.
A mother and daughter have become one of the highlights of this exhibition. Pi Pi and her 10-year-old girl identified as Ya Ya brought 24 paintings.
Ya Ya has osteogenesis imperfecta, a genetic disease that makes the bones thin and brittle. Her mother has a hearing disability.
The girl was diagnosed with the disease after sustaining three bone fractures before 4 years of age.
Pi Pi, an illustrator, used sign language to explain how desperate she felt when learning of her daughter's disease, adding it took her more than one year to accept the truth and pull herself together.
One of Pi Pi's cartoon reflects on her own experience after her daughter was diagnosed with the rare bone disease osteogenesis imperfecta.
She has been invited to become an illustrator for a charity platform on genetics and rare diseases since 2017. So far, she has created 85 scientific cartoons on rare diseases in order to help more families dealing and let more people know about rare diseases and give help, understanding and support to patients and their relatives.
"I am still holding hope for my daughter's future. Though there is no cure for her disease so far, some surgical methods and medications have been developed to prevent and reduce frequent fractures," Pi Pi said. "I am confident more advanced products and technologies will be invented in the future along with medical development."
42-year-old Lanjian'er, who suffers symptoms of muscular atrophy and is unable to walk, is also participating in the exhibition with 24 works.
Unable to go to school or receive any art training, he uses his two fingers, the only part of his body he can move freely, to create his art on a computer. His disease was not diagnosed until last year with help from multiple sources.
He was finally confirmed to have spinal muscular atrophy.
Paintings from Lanjian'er always express a strong desire for movement.
Diseases with incidences lower than 1 per 10,000 are identified as rare diseases. There are more than 7,000 rare diseases worldwide. About 80 percent are inherited, affecting some 350 million people in the world and over 20 million in China. About half of rare disease sufferers are children. About 30 percent of children with rare diseases die before the age of 5. Rare diseases are also responsible for 35 percent of infant deaths in children younger than 1 year old.
A difficulty in diagnosis, lack of medicine and high medical expenses are obstacles for most rare disease patients. The exhibition is one of the drives to draw public attention to rare disease patients and their families, officials said.
If you go:
Time: Friday to Sunday (10am to 5pm)
Venue: H1 hall, Shanghai World Expo Exhibition & Convention Center (inside the 2024 China Shanghai International Children's Book Fair)
Address: 1099 Guozhan Road, Pudong New Area
Price: 5-100 yuan for the book fair (purchase available at the exhibition center's website and various ticket purchase APPs and mini programs).
Source: Shanghai Daily
