Losing brother and thinking about death
Since she was a child, the Thai ethnic girl in Son La - Lo Thi Cuong (born in 1992) - has been pale and weak. At that time, people in the mountainous areas did not know about her congenital hemorrhage, so they mistakenly thought that she had liver disease or anemia.
Ironically, Cuong's younger brother also had similar signs to his sister. During their childhood, the two sisters were constantly sick and continuously went to the district hospital. His father passed away early, it was not until he was 9 years old that Cuong was examined at the provincial hospital.
Here, she was diagnosed with congenital hemolysis. But at that time, Cuong's liver and spleen had grown big, forcing him to cut off the spleen. Despite knowing the disease, due to remote roads, difficult family circumstances and being unable to attend, the two sisters still did not receive regular treatment. Her younger brother passed away early. That loss severely affected Cuong's psychology.
There were times when Cuong thought about death to free himself from the harsh fate. But then she thought about her mother - who had devoted her boundless love to her children, despite her constant illness, she had never complained. Cuong could not let his mother lose both children.
Learn to accept and live positively
After years of treatment and better care, Cuong gradually realized that all the pain in the world is meaningful. Instead of being sad, she chose to live positively, learn to accept, give up and know how to be satisfied with what she has.
Despite her poor health compared to her friends, Cuong still studies general medicine and currently takes care of the health of the villagers where she lives.
She just wished a simple wish: "For me now, just having a loved one to be safe and healthy is enough. I wish I had more health to fight the disease and could be with my child, growing up with him every day.
Don't dare think about getting married or having children
With similar pain, Nguyen Thi Kim Tuyen (from Thanh Hoa) began her treatment journey at the age of 4. When she knew she would have to stay in the hospital for the rest of her life, she never dared to think about getting married or having children.
In her twenties, when love came, Tuyen's dream of a small home was lit up. But the person she loves - the person she trusts and puts her heart on - left her when she learned she was pregnant. He never intended to be involved with a girl with congenital hemorrhage.
Tuyen accepts the misfortune in love and marriage, but still desires to be a mother. According to doctors at the Thalassemia Center - National Institute of Hematology and Blood Transfusion, if the partner does not carry the disease gene, they can completely give birth to a healthy child.
However, the man even refused a screening test. Tuyen alone faced anxiety, insecurity and sleepless nights. "When I knew I was pregnant, I was very scared. Both afraid of not having enough health to have children, and worried that their children would get the same disease as him. Thanks to the advice and support of doctors and the Social Work Department, I decided to keep my child, wait 16 weeks to deposit for testing".
When the diagnostic results were: her child was completely healthy, Tuyen burst into happiness. Despite her poor health, she still tried her best. Although she had to have an early cesarean section, her dream of becoming a mother finally came true.
"My child is now 7 years old. Although the journey was difficult, when I saw my child grow up healthy, I felt that all the efforts were worth it. For ordinary people, being a mother is a great joy. But for a congenital hemorrhage patient like me, it was a journey full of tears, but it was also a miracle - Nguyen emotionally shared.
Peacefully overcoming pain, both illness and betrayal, the girl in her 30s has become a determined single mother. After days of treatment, she still works hard, hoping to earn more income to have money to go to the hospital and raise her children.
The line shared: Vietnam has up to 14% of the population carrying the gene for congenital hemodystrophy. This disease is seriously affecting the lives of tens of thousands of patients like me.
She advised: Young people and people of reproductive age should proactively get tested for disease genes early. People with genetic diseases need to be consulted to avoid giving birth to children with serious illnesses. Couples who carry the same gene and are married should be consulted before pregnancy and have a prenatal diagnosis.
For people like Tuyen or Cuong, doctors at the Thalassemia Center are not simply the ones treating them they are like relatives.
Every year, about 8,000 children are born with Thalassemia
Thalassemia is a common genetic disease that cannot be completely cured. Patients need a lifelong blood transfusion and iron detoxification, greatly affecting their health and quality of life. It is estimated that each year in Vietnam, about 8,000 children are born with diseases at different levels, while more than 14 million people carry the disease without knowing it. Pre-marriage and pre-birth screening is an effective solution to prevent diseases for the next generation.
World Thalassemia Day is celebrated on May 8 every year. In 2025, with the theme "Joining hands for Thalassemia - Community solidarity, giving priority to patients", this message emphasizes the solidarity, companionship and cooperation of the whole society in improving the lives of people with Thalassemia.
