Tony Camaropolous, GUANGZHOU
Until this year, mainland children diagnosed with osteogenesis imperfecta (OI), known more commonly as brittle bone disorder, had little chance of receiving help. Now, that has changed, thanks to the nation's first National Osteoporosis Research Centre at Guangzhou's Nanfang Hospital.
Brittle bone disorder, which affects one in 200,000 people, is a genetic disorder resulting from abnormal genes that control the production of collagen, the protein that gives bone tissue its strength. Due to a weakened bone structure, patients with the disorder are often unable to move their limbs and suffer fractures easily. Some tests are being carried out using growth hormones, but currently there is no treatment other than competent orthopaedic care.
Although the hospital does not offer drugs for sufferers, it uses a scanner to determine the amount of collagen in a patient's bone structure. 'Right now there are not many who have this disorder, but we still need this equipment,' said Chen Jianting, of the orthopaedic department.
Some private organisations, like the China-US Medical Foundation, based in Guangzhou, are also helping sufferers in China. One of the foundation's goals is to build public awareness of the disorder, as well as patients' ability to function in society. 'We need to educate the public about the value of people with disabilities in general,' said Chris Barkley, an American living in Guangzhou who is on the foundation's board. He said that the foundation has helped OI patients find jobs by bringing in human resources managers to do interviews.
The parents of children with the disorder also need support. 'Many parents feel so helpless when they find out their children have the disorder,' said Tina Chen, 30, a volunteer for the foundation. She said that many families receive education about OI through the foundation. That, together with building a network of other parents who have children with the disorder, has helped people feel less isolated.
Parents are grateful to at least find somewhere to have their children examined. 'Right now, there's no treatment for this but we're thankful to have this chance to get some help,' said Sun Yongwei, 35, who travelled 40 hours by train from Ningxia with his wife and nine-year-old son, Sun Quan. 'It's very hard to have a child with this problem.' They came to Guangzhou a few months ago with several other parents after receiving funds from the foundation, which has also helped some obtain medicine from the US.
'The best way for us to help these parents is to help them get some education about the disorder,' said Ms Chen.