Society
Charities spread awareness of hemophilia
By Ma Zhenhuan (China Daily)
Updated: 2010-02-22 07:59
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Painful disease affects estimated 600,000 people worldwide
SHANGHAI:Seven-year-old Lu Zhongqian was born healthy in July 2002 in Beijing but 11 months later his father Lu Jinsheng discovered his son was different from others.
 Doctors and an NNHF manager fill in the Chinese calligraphy which reads "change the course of hemophilia" at the NNHF's second-phase project launching ceremony in Shanghai at the end of last month. [File photo] |
"I found ecchymosis (bruising) on his body and joints that we could not explain. So we sent him to a hospital," recalled Lu, a worker with the Ministry of Railways in Beijing.
The boy was soon diagnosed with hemophilia, a congenital bleeding disorder that affects males and which usually becomes apparent in the first years of life when the child starts to move about independently.
It is estimated that about 600,000 males have hemophilia worldwide. Approximately one in every 5,000 men are born with hemophilia A.
The worried parents then began a long quest to seek a cure for their son. Aside from going to hospitals, they contacted volunteers of the patient group Hemophilia Home of China (HHC) to learn about modern treatments through its website and related medical publications.
"Now my son is almost cured, and I'm so glad to see him going to primary school as a normal kid, though he is one year behind his contemporaries because of his illness," said the proud father, watching his son bouncing on to the stage to sing a song in front of a group of doctors dedicated to treating the disease in Shanghai.
Lu Zhongqian is just one of the hundreds of hemophilia patients in China that received support from HHC and the Denmark-based pharmaceutical company Novo Nordisk, which have been working together towards improving the care and treatment of hemophilia patients in China.
The latter has launched a two-phase project to help teach medical staff, patients and their families regarding treatments and promote knowledge about the disease in China.
Since 200the Novo Nordisk Hemophilia Foundation (NNHF) has launched a 3 million yuan first-phase project in China focusing on education, screening and registration within the six main medical centers in Shanghai, Beijing, Tianjin, Hefei, Guangzhou and Jinan.
In China, a nation with a population of 1.3 billion, only about 5 percent of the estimated 130,000 sufferers are registered and treated, largely because of a lack of awareness of the disease in China's vast countryside.
NNHF helped launch China's first hemophilia web-based registry system and, so far, more than 6,200 patients have signed up.
NNHF also helps fund six laboratory technicians from three medical centers in China to study at the Royal Free Hospital Laboratory in London and aided the training of 330 physicians, 89 nurses and 65 laboratory technicians in China.
So far, a total of 1,616 people with hemophilia have been tested to confirm their diagnosis and the extent of their bleeding disorder.
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It has printed 34,000 copies of related material such as treatment guidelines and nursing manuals concerning the illness.
NNHF announced at the end of last month it would launch the second phase of its project in China, aiming to promote the project to 10 more cities with another investment of 3 million yuan.
All these efforts received positive feedback and support from the nation's health authority, with the Ministry of Health (MOH) of China issuing a formal notice at the end of November last year to require all provincial authorities to launch their registry centers for the illness.
According to Yi Mei, the division chief for Blood Management at the MOH, the ministry will further encourage registration of hemophilia by designating a hospital in each province as responsible for signing up patients and conducting diagnoses.
"We hope that through charity projects such as NNHF, we can improve society's awareness of the project and help educate more patients to improve the quality of their lives eventually," Chen Jun, vice-president of strategic business development at Novo Nordisk China, told China Business Weekly.
"In the first phase, we mainly focus on promoting medical treatment among relatively economically well-off cities such as Shanghai and Beijing. We found out that even in these areas, awareness among doctors and patients was relatively low," he said.
"That's why we are now launching the second phase, to further expand the project's coverage to more inland provinces in central and western China to enable more people from these areas to get first-hand treatment."
