Thalassemia greatly affects population quality.

The pain called Thalassemia

At the beginning of the week, mother and daughter Lu Thi Hue (Khun village, Chau Hoi commune, Quy Chau district) woke up at 4am and took a bus to the Provincial Hematology and Blood Transfusion Center to have tests done and be hospitalized.

This journey has been going on for nearly 6 years now, so even though he is only 7 years old and in 2nd grade, Vi Tuan Khanh has become accustomed to the trips back and forth between Vinh and Quy Chau. In the General Hematology Department 2, Khanh is also a familiar patient, even the doctors and nurses here consider him as a family member.

Treatment for children with thalassemia at the Center for Hematology and Blood Transfusion. Photo: MH.

Khanh was diagnosed with thalassemia when she was only 7 months old. When she first got sick, her symptoms were similar to those of a common illness, such as fatigue and crying. However, because the illness did not improve and the symptoms became more severe, her family took her to a higher-level hospital. After examination, the doctor diagnosed her with thalassemia.

Since then, Khanh has been living with this disease and every two months he has to go to Vinh for a blood transfusion and iron removal. The treatment lasts for 7-10 days. “If he doesn’t have a blood transfusion, he will be tired, bedridden and unable to study,” said Lu Thi Hue.

Accompanying Ms. Hue in recent years is also her nephew (the nephew of her mother-in-law's younger sister). The boy Lu Thien Phuoc is only 4 years old this year but has also spent many years being treated for the same disease. Talking to both parents, the mother of the children also said: Because someone on the paternal side of the family had congenital hemolytic disease, it was passed down to the children.

Treatment for children with thalassemia at the Center for Hematology and Blood Transfusion. Photo: MH.

More than 70% of patients in the General Hematology Department 2 are patients with congenital hemolytic anemia and most of them come from mountainous districts of Nghe An such as Quy Hop, Quy Chau, Con Cuong, Tuong Duong, Que Phong, Ky Son.

In particular, there are many cases coming from one village, one commune. Ha Minh Trang (15 years old) - an 8th grade student at Quy Chau Ethnic Minority Secondary School is one of the oldest students being treated here. Every month, she takes the bus to the hospital for treatment and then takes the bus back. Next to Trang is Vi Thi Hien (who also lives in the same village, Chau Nga commune) and is the same age as her. However, while Trang is still in school, Hien only finished kindergarten and then stayed home. Hien's body is now like that of a 7-8 year old girl, with contracted and pale limbs.

Among the patients being treated here, Vi Thi Hien's situation is quite special because in her family, there are 3 people with the disease. However, less fortunate, Hien's brother and sister passed away in 2007. At that time, one was only 7 years old, the other was only 5 years old. Vy Thi Mai (47 years old) - Hien's mother sadly said: "Having this disease is very miserable. People are busy making a living and getting rich. But my family is only worried about going to the hospital."

“Gap” in premarital health check-ups

Doctor Pham Quoc Hoi - Head of Department of General Blood Diseases 2 - Nghe An Hematology and Blood Transfusion Center said: "Thalassemia is a genetic disease that is quite common in the world with about 7% of the world's population carrying the disease gene.

Currently, Vietnam has about 12 million people carrying the gene and each year about 2,000 children with Thalassemia are born each year. All patients with congenital hemolytic anemia have the same face and in medicine called "Thalassaemia face", which is a prominent forehead, flat nose and buck teeth. Thalassemia is considered a persistent disease, affecting the physical condition and quality of the race. It is worth mentioning that if a person has the disease, the cost of lifelong treatment can be up to 3 billion VND.

People of Nam Nghia commune (Nam Dan district) learn about newborn screening. Photo: MH.

Previously, through research, there were many causes leading to this disease, one of which was a very dangerous cause, which was incestuous marriage. However, currently, Dr. Pham Quoc Hoi said: "Many cases of later illness are not due to incestuous marriage but are the consequences of previous generations. The reason is that in the past, many people in the same family married each other, gave birth to children, and then the disease was in the genes of many people. In these cases, if before getting married or giving birth, they had a pre-marital health check or prenatal screening, they would have avoided hemolytic anemia."

Although the dangers of thalassemia have been warned many times, not everyone is aware of this disease and has measures to eliminate it. Even in the family of Ms. Vy Thi Mai above, although there are 3 people in the family with the disease, when Ms. Mai's daughter got married and had children, she advised her to go for a pre-marital screening and health check-up, but "she still did not listen".

In recent years, to limit this disease, the pre-marital health examination model has also been implemented by the Population Department in many localities. At the same time, it has coordinated with colleges, vocational schools, and high schools in the province to organize activities to check health, increase information provision, equip knowledge and skills in reproductive health care to help young men and women understand and have positive behaviors in reproductive health care.

In 2020 alone, 19 consultation sessions and talks were held for nearly 8,000 students. At the same time, in coordination with hospitals, more than 2,300 people were examined for health by ultrasound to detect the risk of giving birth to children with disabilities and deformities for young men and women.

Health check-up for children in Mon Son commune (Con Cuong). Photo: MH

In parallel with this activity, Nghe An has also implemented a project on prenatal screening and newborn screening. However, although the annual prenatal screening rate is currently achieved, the quality of service has not really met the needs of the people. The reason is that at the district level, there is a lack of medical staff with specialized training in prenatal screening ultrasound, which more or less affects the results of prenatal screening diagnosis, and the detection of suspected diseases is still limited.

In May, to contribute to promoting propaganda and improving population quality, the Department of Population and Family Planning will organize a communication program "World Thalassemia Day" for ethnic minorities in the resettlement area of ​​Ngoc Lam - Thanh Chuong.

“The consequences of incestuous marriage are reduced health, increased rates of diseases caused by gene combinations, and a decline in the quality of the race. Children born to parents with incestuous marriages are at risk of genetic diseases, illness, and poor health.

Besides, incestuous marriage also has negative impacts on culture and family ethics, breaks existing relationships between clans and families, and erodes and changes the good traditional cultural values ​​of the nation.

Mr. Phan Van Hue - Deputy Head of the Department of Population and Family Planning.