Cannot live without other people’s blood, must avoid strong impacts, cannot play sports… continuous care and treatment when necessary are essential requirements for patients with bleeding disorders.
Each year, around 100 patients with bleeding disorders are managed at the National Children’s Hospital. This truly is a burden for each family; without treatment, these children cannot survive.
Fresh Blood Transfusions to Survive
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Little Do Thi Vang (Photo: VNN) |
At first glance, with her fair skin and round figure, no one would think that 15-year-old Do Thi Vang from Hau Loc, Thanh Hoa suffers from anemia. She has already received 20 liters of blood transfusions. Of course, this is not the final number, as Vang needs blood transfusions whenever necessary to maintain her life.
When she was 3 years old, her mother noticed bruises appearing on her daughter’s body, but they did not cause pain.
The family was not too surprised as Vang’s older brother also exhibited symptoms of bruising on his arms and abdomen. He was diagnosed with a condition that causes an inability to quantify Vitamin K (one of the disorders related to blood clotting). As Vang grew older, she once fell off her bicycle, injuring her bladder and causing bleeding that required hospitalization.
The toughest time came when Vang entered puberty; each month during her menstrual period, the bleeding could not be controlled, and she had to receive up to 20 liters of blood.
Dr. Duong Ba Truc, Head of the Clinical Hematology Department (National Children’s Hospital), stated: “In Vang’s case, we had to use medication to suppress hormonal activity to prolong her menstrual cycle, combined with fresh blood transfusions.”
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| Baby Bui Thi Thu, 3 months old in her mother’s arms (Photo: VNN) |
After caring for her daughter for almost a month in the hospital, Nguyen Thi Tu, Vang’s mother, shared: “This is the third time I’ve accompanied my child to the hospital. My family works in agriculture, and each time my child is hospitalized, it is very concerning, but we have to persevere. The longest treatment stint was in 2004 when the family borrowed money from here and there to pay for Vang’s treatment, totaling 28 million VND. Now that we understand the illness and treatment, we still spend several million each month.”
Both Vang and her brother suffer from bleeding disorders, but fortunately, they were diagnosed and treated in time.
In contrast, a child of Bui Thi Quyen from Thai Nguyen passed away at just over 3 months old because the family thought the baby had a skin rash due to the appearance of red spots on her face.
The family took the baby to the provincial hospital, where she was diagnosed with a fever and sent home for treatment. Later, the baby continued to cry and grew weaker. When the family rushed her to the hospital, she had already suffered from cerebral hemorrhaging and died.
Learning from her older brother’s experience, Bui Thi Thu, just 3 months and 10 days old, exhibited unusual symptoms: cyanosis in her armpits and bleeding that lasted for two days without stopping… Quyen took her daughter to the National Children’s Hospital. Here, doctors diagnosed Thu with a condition related to blood clotting disorders that required treatment with Vitamin K.
Continuous Care and Treatment When Necessary
This is the requirement for those unfortunate enough to suffer from this illness. According to Dr. Duong Ba Truc, these patients have Hemophilia.
Hemophilia is a hereditary bleeding disorder caused by a deficiency or abnormality in blood clotting factors. The disease manifests as prolonged bleeding in various parts of the body, most commonly in muscles and joints.
Genetic Diagram of Blood Clotting Disorders (Photo: VNN)
Dr. Duong Ba Truc noted that many healthcare facilities lack blood clotting tests and have limited understanding of the disease, even leading to misdiagnoses resulting in complications for patients.
In addition to self-care for patients, doctors also need to enhance their understanding of this condition and its treatment.
This is a lifelong condition that requires ongoing treatment, making it quite expensive and hereditary.
Hemophilia typically occurs in males and cannot be cured. However, with comprehensive care and bleeding prevention, patients can live almost normally. Mild cases of hemophilia may only be detected when patients reach adulthood, but often, symptoms appear from a young age. Parents may notice that children bruise easily and experience prolonged bleeding from minor bumps or cuts. The disease can occur due to genetic mutations, but most cases are hereditary. Mothers carry the gene that causes hemophilia but do not exhibit symptoms themselves, passing this gene on to their sons. |
Meanwhile, health insurance does not yet cover congenital or hereditary conditions. Many families face significant challenges when a member has this illness. Therefore, it is essential for health insurance to provide coverage for these cases.
“Currently, in advanced countries, biotechnology has been used to create substances that counteract hemophilia without the need for blood donations from others. However, these are new and expensive medications, so hospitals are requesting imports of these substances as they are not yet able to purchase them on their own,” Dr. Truc stated.
In the meantime, while there are no medications to effectively manage hemophilia, patients with this condition greatly need community support through blood donation programs.
It is estimated that there are about 5,000 patients with this condition in Vietnam, with only 800 diagnosed and managed (16%). Nearly half of hemophilia patients have a family history, and many families have multiple affected members across generations.
Experts suggest that to reduce incidence rates, patients need to be diagnosed early. For instance, if there is a family history of hemophilia, potential parents should seek genetic counseling to assess the risk of transmitting the condition to their children.
Le Ha
