Challenges in the treatment of thalassemia

Persistent pain

During a business trip to the border commune of La Lay not long ago, we happened to meet HVN. At the age of 24, N. could have devoted his youth to work and enjoy the joy of his small family if he had not been suffering from TMBS. This disease makes this young man short and weak, his body is always in a state of fatigue, his limbs are numb and aching, and his health is not enough to stick with a job for a long time.

“Since I was a child, I have been sick often. My family thought I was possessed by a “ghost” so they invited a shaman to come but it did not improve anything. Four years ago, I had a health check to go to work as a factory worker in the South and discovered that I had TMBS. Since then, partly because of the difficult roads and my family’s difficult circumstances, and partly because I did not think the illness was dangerous, I only returned to the hospital occasionally,” Mr. N. confided.

TMBS makes the patient's body become short and always tired - Photo: TP

At the Pediatrics Department, Vietnam-Cuba Friendship Hospital Dong Hoi, D.NTH (12 years old), in Minh Hoa commune is one of many cases of children who are facing TMBS. This year, he is in 7th grade but his body is as small as a 7 or 8 year old child. His skin is yellow and pale, his cheeks are increasingly sunken due to the effects of the disease and the hardships of traveling nearly 130km from the mountains to the lowlands to perform regular dialysis sessions.

H. used to love going to school, but this illness makes him spend more time in the hospital than at school. That is why, in the luggage of both father and son, there is always a book to help H. ease his longing for school and friends.

H.'s father said: "When I received the news that my child had TMBS, I was very sad. Our house is far from the hospital, so every time I take my child to the hospital, I am worried because the expenses during the time he is in the hospital are very high. For more than 10 years since we found out that my child was sick, my husband and I have taken turns taking him for treatment. It is hard work, but I hope my child will be healthy every day."

The worry of illness and the burden of life make the shoulders of patients and their families of TMBS patients seem to be heavier every day. Not only does this disease bring physical pain to the patient, it also withers the spirit and exhausts the economy . What is even sadder is that many patients also suffer from many complications such as: osteoporosis, skull deformities, broken forehead, flat nose, enlarged spleen and liver that can affect life.

Difficulties in treating Thalassemia

Thalassemia is a genetic disease that leads to anemia and cannot be completely cured, so the patient must be treated for life. Dr. Pham Thi Ngoc Han, Head of Pediatrics Department, Vietnam-Cuba Friendship Hospital Dong Hoi, said that there are currently two main methods to treat Thalassemia: blood transfusion and iron chelation.

At the Pediatrics Department, Vietnam-Cuba Friendship Hospital Dong Hoi, on average, there are about 40 Thalassemia patients coming for regular check-ups each month. Each patient is treated on average 1-3 times/month. With such a number of patients being treated for congenital hemolytic anemia, the amount of blood needed for treatment is huge. However, the frequent shortage of blood reserves makes treatment very difficult. Many patients have to stay in the hospital longer than expected because they have to wait for blood transfusions.

In recent times, doctors and medical staff at the hospital have had to continuously appeal through various channels to help patients with blood for treatment. But this is only a temporary solution.

In Vietnam, according to statistics from the Ministry of Health , there are about 12 million people carrying the TMBS gene and more than 20,000 people with severe disease who need lifelong treatment. Each year, about 8,000 children are born with TMBS; of which about 2,000 children have severe disease and about 800 children cannot be born due to hydrops fetalis. All provinces and cities in the country have people with the disease and carrying the gene that causes TMBS.

According to statistics from the Ministry of Health, the average cost of treatment for a severe TMBS patient from birth to 21 years old requires about 470 units of blood transfusion and billions of VND to maintain life. Not only does it bring serious consequences to the patient, their family and society, TMBS also becomes a burden for the health sector. However, TMBS can still be prevented by screening measures.

Dr. Han noted: “To prevent TMBS, couples before marriage and people of childbearing age should proactively test and screen for disease genes as soon as possible. People carrying disease genes need to be counseled and have their genes managed to avoid giving birth to children with severe disease. If the wife is pregnant, prenatal screening is needed in the first months to detect possible disease genes in the fetus and counseling and termination of pregnancy is needed if the fetus is found to have severe TMBS. Promoting propaganda and mobilizing families with children of high school age to voluntarily participate in screening for TMBS will also contribute effectively to raising community awareness and preventing and gradually eliminating TMBS.”

Truc Phuong

Source: https://baoquangtri.vn/xa-hoi/202509/thach-thuc-trong-dieu-tri-benh-tan-mau-bam-sinh-93e5a75/