Journey to find the life of thalassemia patients

Update: 13:44 | 14/07/2019

(BGO) - More than 12 million people carry the gene of thalassemia, about 12,000 people contract the disease and 2,000 children suffer from severe thalassemia with treatment costs of up to 3 billion VND (128,755 USD) per person by the age of 30. These are alarming numbers of thalassemia in Vietnam provided by the National Institute of Hematology & Blood Transfusion. In Bac Giang, there are many patients with this disease. For them, blood transfusion is the only hope to prolong their lives.

Hospital is "home"

Le Hong Thuy from Que Nham commune (Tan Yen district) told about her grandson Ha Gia Bao (4 years old). He was born a little underweight but as healthy as any other child. By the time he was 5 months old, his skin became dark and pale, and he sniveled and ate little, his family took him to visit a doctor who concluded that he suffered from thalassemia.

Bac Giang province, thalassemia patients,  blood transfusion, intensive treatment, lifelong blood transfusions, consanguineous marriage, humane deed

The grandmother always accompanies Ha Gia Bao in each visit to hospital for blood transfusion.

Currently, despite intensive treatment, Gia Bao's disease is progressing badly and the frequency of blood transfusion also increases. Previously, he took blood transfusion in every 1-2 months and now I have to go to the hospital for blood transfusion every 2 weeks. The more worrisome thing is that his spleen swells - one of the dangerous complications of the disease and doctors have ordered to remove it.

Regularly going to the hospital since he was 3 months old, now Hoang Viet Cuong (7 years old) from Man village, Vinh Khuong commune (Son Dong district) is no longer afraid of needles. When they were born, both Cuong and Gia Bao were normal, but only a few months later, they had symptoms of thalassemia.

Even so, Toan still did not give up his hope: "Whenever our health is good, my wife and I try to work hard to take care of our child. After a blood transfusion, he is better, happy, flexible and able to go to school. I do not expect anything more.”

The disease is difficult to cure but can be prevented

Currently, the Department of General Pediatrics is caring for and treating more than 80 children from 1-15 years old in the province with thalassemia. This is an inherited disease, with two prominent manifestations of anemia and iron overload in the body. Now, there is no radical cure but only treatment of symptoms. Therefore, patients will take lifelong blood transfusions, causing cost burdens for patients and their families.

According to the latest survey of thalassemia in Vietnam conducted by experts from the National Institute of Hematology & Blood Transfusion on over 30,000 people in regions across the country, the rate of people carrying the disease gene is about 13 percent. In ethnic minority areas, this rate can be up to 50-60 percent because consanguineous marriage still exists in many places.

Sharing blood drops of love

Thanks to the care and companion of relatives and the wholehearted treatment of doctors and nurses, especially the blood drops of love shared by the community, girls and boys who take long-term blood transfusions since they are a few months old, are still healthy and continue to live and study.

Bac Giang province, thalassemia patients,  blood transfusion, intensive treatment, lifelong blood transfusions, consanguineous marriage, humane deed

Thalassemia is a hard-to-treat genetic disease that can be prevented. To ease the burden on each family and the whole society caused by this disease, firstly, it is necessary to raise people's awareness to actively prevent it. Young people should visit the doctor for medical advice and screening for genetic diseases before marriage and giving birth. These screening tests are performed in provincial and district hospitals at affordable costs

Doctor Nguyen Thi Hoan from the Department of General Pediatrics under the Bac Giang Obstetrics and Pediatrics Hospital.

The case of Lam Thi Nghia (born in 2000) in Cam Dan commune (Son Dong district) is an example. Experiencing periodic blood transfusions and iron excretions, Nghia's health has gradually improved. 

In recent years, on the day of blood transfusion, she took the bus herself to hospital for treatment. With a 19-year-old girl, now the hospital is her home and doctors are also her relatives.

To help Nghia and many patients with thalassemia maintain their lives, we must mention the humane deed of many people when they did not hesitate to "share their red blood drops".

The provincial Association of Child Rights Protection is currently cooperating with the Italian Association for Aid to Children (CIAI - a non-governmental organization) to support the treatment, blood transfusion and spleen removal for children with thalassemia from poor households or families with 2-3 children suffering from disease.

In Son Dong district, which has the largest number of thalassemia children being treated in health facilities in the province (about 40 children), the association established four adolescent health care clubs at four high and secondary schools, attracting nearly 200 teachers and students. Through this, it builds a team of key communicators to improve the effectiveness of communications on the disease.

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Tuong Vi

 
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