Only 10pc of sufferers get treatment
Health activists say the goals of World Haemophilia Day are out of reach for mainland haemophiliacs, who face a lack of basic treatment and high-priced blood products.
The theme of this year's World Haemophilia Day, which fell on Saturday, was 'Visit your treatment centre regularly', with sufferers urged to 'treat bleeding quickly, avoid aspirin, exercise and keep fit'.
In affected people, blood lacks a coagulation factor and its ability to clot is greatly reduced.
One in 10,000 to 20,000 people has the condition, according to the World Haemophilia Federation. Therefore, there should be between 65,000 and 130,000 haemophiliacs on the mainland.
'But hospital records show that only 6,000 to 7,000 have ever been treated, which means about 90 per cent of patients have either been misdiagnosed or, worse, never seen a doctor,' said Huang Zikai, the Guangzhou-based deputy director of the Haemophilia Home of China.
Mr Huang said that even the 'lucky' 10 per cent who received medical assistance were not always fortunate.
A survey conducted by the non-governmental organisation found that 91 per cent of these patients did not get appropriate or timely treatment.
Without such attention, haemophiliacs can suffer various complications, such as distorted joints, damage to the nervous system or early death.