Thalassemia is a genetic blood disorder that occurs mostly in children and can require life-long blood transfusion treatments. But those who suffer from the disorder often find out too late.
A child being examined at the Tumor Hematology Ward at the Ho Chi Minh City Children's Hospital No. 2. The hospital runs a thalassemia club where parents can bring their children to sing and play together.
According to Dr. Nguyen Dinh Van, deputy director of Oncology and Hematology at the Ho Chi Minh City Children's Hospital No. 2, thalassemia is a kind of generic anemia that results in fatigue, exhaustion, weakness and shorter life spans.
Thalassemia patients produce an abnormal form of hemoglobin, the protein in red blood cells that carries oxygen. The disorder results in a decrease of blood cells, or the inability to synthesize the globin string of red blood cells. This leads the patient to suffer from anemia.
Minor thalassemia patients don't require blood transfusions and need only to follow a strict treatment regime. However, serious thalassemia patients need blood a transfusion every month, while medium sufferers need one once every few months.
But the problem is that frequent blood transfusions can cause iron accumulation in the liver, heart and hormone glands. This will cause disorders such as liver ulcers, heart illness and stunted growth.
Serious thalassemia patients also face the risk of heart failure, which usually happens between the ages of 20 and 30. Medium level patients can live longer, depending on the amount of blood transferred, iron discharged and the body's response.
Children with minor thalassemia can live normal lives, but will pass on the disease to the next generation.
Another treatment option is stem cells transplantation, which is not very common in Vietnam and is very dangerous.
According to Dr. Van, even in developed countries, doctors rarely consider stem cell transplantation for thalassemia.
A safer alternative for severe patients is spleen surgery, though even this method can sometimes make the condition worse.
Reducing the risk
As prevention is always the best means of defense against any disease, people who have any reason to suspect they might have thalassemia should seek medical assistance or consult with a doctor.
Parents should definitely be tested so they can avoid passing the disease to the next generation.
Pregnant women can go for prenatal screening through amniocentesis, in which their amniotic fluid sample is tested for DNA to see if there is any gene mutation.
The best advice for couples is to do a DNA test before deciding to have children. People who have genes that cause thalassemia are not recommended to marry each other.
Two places that offer DNA screening services for thalassemia in Vietnam are the National Hospital of Pediatrics in Hanoi and Tu Du Hospital in Ho Chi Minh City.
Though such screenings are often considered expensive, they are but a fraction of the cost of treating the disease.
The Ho Chi Minh City Children's Hospital No. 2 runs a thalassemia club where parents can bring their children to sing and play together.
A serious thalassemia patient needs to have monthly blood transfusions with blood bags that cost VND400,000 each. Older children may need two bags each time, but most only need one. They should also take pills that help to discharge excess iron from the body.
On average, treatment for a thalassemia patient costs about VND10 million per year, and this expensive process extends for their whole life.
The lack of awareness is also another obstacle for treatment. It is estimated that there are about 100,000 children who have thalassemia in the world every year. But most cases in Vietnam are found too late when the disease has spread and caused disorders in other parts of the body such as the heart, liver and bones.
Severe thalassemia treatment in developed countries can add 30 to 40 years to a patient's life expectancy, however, treatment in Vietnam generally only adds 15 to 25 years.
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