KARACHI: Around 20,000 children are estimated to be suffering from haemophilia in Pakistan, of whom just around 8,000 have been reported to the authorities, according to the figures officials revealed on Thursday, World Haemophilia Day.

Officials said there were just 4,000 haemophilia reported patients in Sindh, yet it was too difficult for them to live a prosperous and normal life as they needed expensive medicines to control it.

Haemophilia is a genetic blood disorder. The blood takes longer to clot after an injury. The first signs of the condition are usually discerned as soon as baby is born — prolonged bleeding after cutting the umbilical cord and also after the circumcision.

If a child has frequent nosebleeds, bloody urine, bleeding gums or muscles, joint pain or swelling, the child probably suffers from haemophilia.

Experts call it an X-linked disorder, in which ‘the male is the sufferer and female is the carrier’. They said it is a male disease, which, a male child could inherit from his mother, while a female child could become herself a carrier like her mother.

“This disorder is caused by clotting factor eight deficiency, which is called haemophilia-A, while clotting factor nine deficiency is called haemophilia-B,” Dr Zahid Hasan Ansari, secretary of the Sindh Blood Transfusion Authority, told Dawn.

The symptoms of both deficiencies of this bleeding disorder are similar which are mainly caused by the involvement of joint in soft tissues, he added.

Experts said haemophilia was not a problem in the west, as they manufactured the deficient factors and offered them on low prices.

However, they said, the factors were not available with the public sector healthcare facilities, also because it was not the responsibility of the government to provide them free to the people.

A haemophilia patient needs at least two vials of the deficient factors costing at least Rs7,000 a month.

“Manufacturing the deficient factors would be the permanent solution to provide a normal life to people who are suffering from this disorder. Most of such patients die young because of non-availability of the medicine. We can help them live longer and die old like many of us,” an official remarked.

Dr Ansari, however, said his authority had written to all the district hospitals in the province to register patients in their respective areas and procure the factors at government expense to help them live long.

Since the missing clotting factors are not available in Pakistan, the patients are given fresh frozen plasma (FFP). This is what remains after blood cells and platelets are removed from the blood itself.