Special competition for people carrying the thalassemia gene

On May 8, the National Institute of Hematology and Blood Transfusion and the Vietnam Thalassemia Association held a special festival, a festival for people carrying the thalassemia gene (congenital hemolytic anemia) called "Listening to insiders", in response to World Thalassemia Day.

The program was organized to convey the message about the necessity of screening and testing for thalassemia before marriage with two contests for thalassemia patients: "Online Propaganda" and "Red Blood Cell Adventure" painting.

The difficult journey of people with thalassemia

Shortly after its launch, many thalassemia patients actively participated in the program with simple, honest and emotional articles. For some, the hospital was their second home since birth, doctors became family members, some went through life and death, their health was exhausted... but with extraordinary strength, they overcame all challenges.

After the tears of sadness and the "what if" questions, most of the articles reflect an optimistic spirit: "I just became friends with the disease early on", "I cannot overcome fate, but I overcome the disease", "I am determined to live with the disease"...

Pediatric patients share their treatment journey at the National Institute of Hematology and Blood Transfusion.

In each story, readers see the light of hope as they are still living healthier every day with donated blood; seeing many families with thalassemia happily welcoming their healthy newborn children.... Each word written by the patient himself contains the appreciation of life and the desire for a future for themselves and their descendants.

Dr. Bach Quoc Khanh, President of the Vietnam Thalassemia Association, shared that the true stories and emotional pictures from you not only touched the hearts of readers but also strongly spread the humane message about thalassemia. You bravely shared your journey, your dream of a healthy life, and especially, conveyed an extremely important message from your own experiences: “Screening for thalassemia genes is the key to protecting future generations.”

Dr. Bach Quoc Khanh, President of Vietnam Hemolytic Association, spoke.

Expressing his emotions when receiving the articles of "insiders", Dr. Vu Duc Binh, Deputy Director of the National Institute of Hematology and Blood Transfusion, highly appreciated the courage of the patients, sharing about their journey of living with the disease and their simple dreams through literary and artistic works; especially the emotional paintings about the "adventure" of red blood cells drawn by the children themselves, expressing their dreams of a healthy life. These activities not only spread the message about the disease in the most authentic way, but also are a vivid expression of the spirit of solidarity, mutual love,

As a result of the writing contest, the Organizing Committee awarded the Special Prize to patient Nguyen Duong Hung (Vinh Phuc); the First Prize to Ha Thi Lanh ( Phu Tho ); the Second Prize to Lu Thi Giang (Son La), Duong Bich Ngoc (Vinh Phuc); the 2 Third Prizes to Nguyen Thi Kim Tuyen (Thanh Hoa) and Ma Thi Thu Hang (Tuyen Quang). The remaining patients were awarded the Brave Propaganda Prize.

Awarding prizes to winning authors at the "Online Propaganda" writing contest.

With the "Red Blood Cell Adventures" painting contest, the Organizing Committee awarded 5 special prizes to the 5 children who won the highest prizes. All patients participating in the propaganda and painting contest received gifts from the Organizing Committee.

Need to actively change the community to screen for disease genes early

It is estimated that each year, about 8,000 babies are born with thalassemia at different levels. Depending on the mutation, the level of disease manifestation is different in each case. The most serious is that the fetus cannot be born because of this disease.

People with severe or moderate disease often show symptoms early (maybe from a few months old) and by the age of 5-6, they are anemic and need to go to the hospital for a blood transfusion; people with mild disease are often discovered to have the disease when they have other diseases or during a health check (the time the disease is discovered does not mean that they have the disease at that time, this is a congenital disease that occurs in the fetus).

The children won prizes in the painting contest.

Sharing on the sidelines of the contest, Dr. Thu Ha, Director of the Thalassemia Center, National Institute of Hematology and Blood Transfusion, said that according to a 2017 study, it is estimated that the whole country has more than 14 million people carrying the disease gene (people carrying 1 disease gene). It is worth mentioning that most people carrying the gene do not know they carry the gene until they go for testing or unfortunately give birth to a sick child.

People carrying the disease gene can pass the disease gene on to the next generation. If both husband and wife carry the disease gene (2 mutated genes interacting to cause severe disease), then each birth has a 25% chance that the child will have 2 disease genes (diseased), a 50% chance that the child will only carry 1 disease gene (healthy) and a 25% chance that the child will not have the disease gene.

Dr. Ha said that the rate of thalassemia gene carriers is highest in the Central Highlands and South Central regions, up to 80-88%. However, this region mainly has mild mutations. Meanwhile, ethnic groups in the northern mountains such as Thai, Muong, Tay, Nung, Dao... have a high rate of severe mutations, leading to a very high risk of disease.

Thanks to the expansion of the treatment network for blood diseases, along with the update of many advanced techniques in screening and treatment, patients have a better quality of life than before. The community also raises awareness in premarital and pregnancy thalassemia gene screening.

"To date, screening for abnormal antibodies and appropriate blood transfusions have been widely applied, improving blood transfusion safety to 50% of patients. Policies on prenatal and premarital screening have also been issued and implemented, contributing to raising public awareness," said Dr. Ha.

Dr. Vu Duc Binh, Deputy Director of the Central Institute of Hematology and Blood Transfusion, shared at the program.

Dr. Vu Duc Binh affirmed that thalassemia can be effectively controlled if we simultaneously manage and treat the disease well and carry out preventive work, changing the awareness, attitude, and behavior of the community towards early screening for thalassemia genes before marriage/before giving birth.

"We always provide the best conditions to improve the quality of diagnosis and treatment for patients treated at the hospital. We believe that managing thalassemia is important and needs to receive more attention from leaders at all levels. Treatment needs to go hand in hand with prevention to gradually reduce the number of children born with the disease," Dr. Binh shared.

He also believes that when the whole population understands correctly and fully about thalassemia, in the near future - the young generation and couples who have not had children will have enough awareness to not give birth to more babies with thalassemia.

Source: https://nhandan.vn/cuoc-thi-dac-biet-cua-nhung-nguoi-mang-gene-benh-tan-mau-bam-sinh-post878101.html