Nearly 30,000 Vietnamese people have incurable disease, said Director of the Central Institute of Hematology and Blood Transfusion Nguyen Anh Tri said at a press brief held yesterday by the Ministry of Health and the Institute in Hanoi in celebration of the World Hemophilia Day.
|A man is treated the incurable disease in the Central Institute of Hematology and Blood Transfusion (Photo: SGGP)|
Hemophilia is an incurable disease and hemophiliacs usually suffer and die early. Hemophilia is a rare bleeding disorder in which the blood doesn't clot normally. Hemophilia usually is inherited which means that the disorder is passed from parents to children through genes.
A person has hemophilia, he/she may bleed for a longer time than others after an injury. He also may bleed inside your body (internally), especially in your knees, ankles, and elbows. This bleeding can damage his organs and tissues and may be life-threatening.
Though modern medicine can early detect the disease , it is incurable; accordingly patients have to live with the disease in their whole life. The two main types of hemophilia are A and B, Professor Tri added, if you have hemophilia A, you're missing or have low levels of clotting factor VIII (8). About 8 out of 10 people who have hemophilia with type A. If you have hemophilia B, you're missing or have low levels of clotting factor IX (9).
Hemophilia usually occurs in males (with rare exceptions). About 1:10,000 males are born with hemophilia each year.
At present, it is estimated that around 400,000 people suffer incurable disease in the world including 30,000 Vietnamese. Most of people having Hemophila gene do not show disease symptom and just 6,000 really have symptoms of the disease.
Worrisome, nearly 2,400 people with Hemophila gene are taken care in seven medical clinics in the country in which can provide enough treatment to Hemophila patients.
Though Vietnamese medicine has made great progress in treating Hemophilia and other blood disorders, it is facing difficulties as just 40 percent of Hemophila patients in the country had been discovered and received proper
Moreover, people’s awareness of the disease is still limited; hence they come to medical clinics for treatment at late stage. Along with this, policies on health insurance for Hemophila people is still improper causing difficulties for patients who must pay an average amount of VND40 million for a course of treatment for the disease.
Worse, those who have the disease can die if their disease is not early detected and treated properly. The life expectancy for a person with severe hemophilia was less than 20 years old. But if they are treated, they can get a healthy life and partake in social activities like others, said Professor Tri.