Need to understand correctly about thalassemia

dangerous disease

Nong Thi Bao Khanh in Tan Ngoc village, Ngoc Lam commune (Thanh Chuong) is studying in grade 6 at Huong Tien Secondary School this year. However, looking at her, it is hard to believe that she is 12 years old, because she has a small figure, pale yellow skin, and is weak. Her mother, Ngan Thi Tien, also said: Khanh's health is very weak, so she has to try hard to be able to go to school. The family does not force her because the biggest wish is for her to be healthy.

At 7 months old, Bao Khanh's mother discovered that her child had Thalassemia. When she first got sick, she only saw that her child was different from other children, because he always showed signs of fatigue, yellow skin, and that he did not grow despite being raised for a long time. Worried, her family took her to Vinh for examination and the doctor diagnosed her with Thalassemia - a congenital blood disorder.

Sharing more about this, Bao Khanh's mother added: "I don't know where my child got the disease from. The doctor said it could be due to incestuous marriage or the parents' genes had the disease. My family has not yet gone to the doctor to determine the exact cause. But now I'm scared and don't dare to have more children."

Thalassemia makes this student smaller than her peers. Photo: My Ha

For more than 11 years, carrying this deadly disease, Ms. Ngan Thi Tien's family has been accustomed to taking their child to the hospital for treatment and blood transfusions every month. Even now, Khanh still has to go to the hospital every month.Center for Hematology and Blood TransfusionThe province treated him for 7-10 days and he was forced to miss school regularly. The most recent serious illness was when he was 10 years old, with symptoms of an enlarged spleen and surgery... Khanh's family situation is difficult, both parents are farmers, so having to travel a long distance every month to treat their child is extremely difficult.

Ms. Ho Thi Mon (born in 1998), residing in Ngoc Lam commune (Thanh Chuong) also has 2 children with thalassemia. The older child is 4 years old this year, the younger child is 2.5 years old. “When I first gave birth to my first child, I thought he was completely normal. However, when he was 7 months old, he got pneumonia and kept coughing. The family decided to take him to the doctor and did tests and discovered that he had thalassemia,” Ms. Mon confided.

Treatment for patients with thalassemia at the Hematology and Blood Transfusion Center. Photo: My Ha

After examination, the doctors also suspected that the disease of the couple's child could be due to incestuous marriage and the doctors advised them not to have any more children, because this is a genetic disease. However, Mon and her husband still decided to have a second child. Like the first child, the second child also had this disease. Mon shared: "If we had listened to the doctors' advice, the family would not have had to suffer like this. Every month I have to take the bus to take the two children to Nghe An Hematology and Blood Transfusion Center for treatment. Looking at the two children pale and malnourished, the family did not know what to do because the family was poor...".

In the entire Thanh Chuong district, 16 cases of thalassemia have been detected, mainly in resettlement communes with a large population of ethnic minorities. However, these are only cases that have been detected early and are being treated at the hospital, the actual number may be higher due to lack of screening in the community.

“Thanh Chuong is a district with a large area, a large population, a large number of people of childbearing age, early marriage still occurs in some localities, malnutrition in children is still quite high, more than 12%. In addition, reproductive health issues for adolescents, young people, and unwanted pregnancies are still a challenge for the district's population work.

In particular, although the rate of thalassemia is not high, it still occurs silently with more than 0.1% of the population carrying the gene for this disease and there are many severe cases. This shows that the risk of the disease in the community is still very high and solutions are needed soon to support and limit the development of the disease.

Mr. Nguyen Van Chien - Vice Chairman of Thanh Chuong District People's Committee

Raising awareness

At the Provincial Hematology and Blood Transfusion Center, most doctors and patients are as close as family. This is also normal, because there are few diseases as specific as thalassemia and if unfortunately infected, having to go to the hospital "like eating" is no longer strange. Moreover, the disease requires long-term, regular treatment with a cycle of at least once a month to maintain stable health.

Lang Minh Truong and Lang Van Phi are considered by doctors at the Nghe An Province Hematology and Blood Transfusion Center as typical cases of Thalassemia because they are both brothers and have been working at the hospital for over 10 years. Their home is in the border commune of Thong Thu (Que Phong). Every month, Vi Thi Lan (Truong and Phi's mother) takes her two sons 200km to the hospital.

In addition to the time spent in the hospital, back home, Truong and Phi went to school at Thong Thu Secondary School for Ethnic Minorities (Que Phong). Although they were allowed to stay in a boarding school, every day Ms. Lan had to take her children more than 15km to school because their health was poor. "After only a few days of studying, the school called their parents to pick them up because they had a stomachache and vomited. Picking them up and dropping them off was very difficult, but my children were sick and had to abstain from many foods and could not eat at boarding school like normal children...", the mother of the two children said sadly.

Every year a large amount of blood is needed to treat patients with thalassemia. Photo: Thanh Chung

Doctor Nguyen Dinh Khue - Director of the Provincial Hematology and Blood Transfusion Center said: "The Center is treating over 100 Thalassemia patients, including many children who have to undergo long-term treatment, their lives are closely tied to injections and transfusions, so their circumstances are very difficult."

According to estimates, the average cost of treatment for a severe patient from birth to 30 years old is about 3 billion VND. Nationwide, with the number of patients increasing rapidly, each year more than 2,000 billion VND is needed for all patients to be able to be treated (at minimum) and about 500,000 units of safe blood are needed.

Currently, the number of patients with thalassemia has been overloading hospitals, creating heavy pressure on blood banks as well as a burden on social costs.

Along with the pressure on treatment costs, Thalassemia has been causing very serious consequences to the race, causing long-term consequences for the lives of patients and the community. Mr. Nguyen Ba Tan - Head of the Provincial Department of Population and Family Planning also added: "Congenital hemolytic disease is a family disease, inherited because the patient receives the disease gene from both parents. One of the main causes of the disease is due to incestuous marriage. Determining the cause, early detection, and disease prevention are considered as solutions of great significance in the work of caring for and protecting children's health, improving the quality of the population in the present and the future".

Leaders of the Provincial Department of Population and Family Planning presented gifts to families with thalassemia in Thanh Chuong district. Photo: My Ha

To raise awareness of this disease, this year, Nghe An Population Department organized the World Thalassemia Day Communication Program 2022 (May 8, 1986 - May 8, 2022). Through this, families and people will better understand the disease. At the same time, it will enhance the responsibility of all levels, sectors, especially the medical staff, to better understand and be more responsible in repelling this disease. This is also considered a milestone, an initial mark to mobilize the whole society to focus on solving the problem of Thalassemia in Nghe An.