Village to Raise a Child Entry - Youth Thalassemia Operation, Hanoi, Vietnam
Do you know that we have an excellent transportation system in our body? One of our vehicles is the red blood cell, the carrier of oxygen, which consisted of many hemoglobins. The hemoglobin has four protein fragments. Each hemoglobin can carry up to four oxygen molecules, providing the oxygen for the body: brain, lung, and heart. The human body is amazing, right? However, sometimes, a tiny genetic error occurs, making our hemoglobin struggles to carry oxygen. When there’s a mutation in one of the genes involved in hemoglobin production, that person is considered to have Thalassemia.
So, what is Thalassemia? Thalassemia is an inherited disorder when patients receive Thalassemia genes from their parents. If both of the parents carry the Thalassemia genes, they will give birth to a child suffering from Thalassemia major with the rate of 25%. In addition, 50% of their children will be carriers and the other 25% do not contain the Thalassemia genes. Patients with Thalassemia usually expose symptoms including severe anemia, paleness, failure to thrive, enlarged spleen, enlarged liver, and jaundice. These people have to live with the disease in their whole lives, and they need to do blood transfusion regularly since transfused healthy red blood cells deplete through time. The accumulated iron in the patient’s body needs to be removed by iron chelation therapies. Currently, the gene carriers are spread throughout the world and are prevalent in the Southeast Asia region.
Vietnam is not an exception. According to a recent statistic, there are approximately about 10,000,000 carriers in the Vietnam population, making up to 11%; 20,000 thousand people, mostly children, are living with major Thalassemia, and about 2,000 children are born with Thalassemia (major) each year. We believe that prevention is the most effective solution to fight back Thalassemia.
Prenatal screening, which includes a blood test for Thalassemia, helps a pregnant couple to ensure a healthy embryo and get professional counseling from the doctor if complications occur. Also, a couple should get their blood tested for Thalassemia before having children for a better future pregnancy. We conducted a survey regarding the awareness of Thalassemia over five main universities in Hanoi, Vietnam. Around 1,000 responses were recorded, and only about less than five percent knew what Thalassemia is, and none of them have ever run a Thalassemia blood test.
Regarding the situation, we decided to start an organization YTO with the aim to raise the awareness of this disease and to simplify the process through which a person need to go to have a Thalassemia test. The principle we based on is the social recommendation. The main argument of this principle is that human tend to listen to people around them friends, family relatives, teachers rather than the press, government’s recommendation.
For the first stage of our campaign, we will target college students and parents. Parents have a high awareness of health care and are worried about their children. The main instruments to approach this group includes, but not limited to, mass media – TV programs, newspapers, magazines, news website, forum – hospital programs, and social relations – neighborhood group. In Vietnam, every neighborhood has a small group that gathers people weekly or monthly to have discussion and announcement about various ongoing aspects in the society. We will connect to these group and implement our awareness program.
That is about raising awareness; what about the service we offer to satisfy the people’s need? We will open a website with the purpose to connect the testing centers that provide Thalassemia screening throughout the region and proper information about the disease. All of the basic facts about Thalassemia will be posted online. In addition, activities and events of our organization will be announced on the website to increase the effectiveness of mass communicating. The site will also include the “Book Online” section. The patient can select a suitable testing site and time and register for a blood test.
The result will be provided both online and offline. Also, the blood test price will be reduced because of our received sponsorship. Each registered person will be given a link to send to their friends, and if their friends register the test with that link, the cost will be reduced. Our ultimate goal is to raise the awareness and to provide the service. We formed the operation in the belief that every single individual who is born into this world has the right to live a happy life, and the right to pursue his or her dream, the right to explore this world. We hope to bring smile to our next generation.
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Do you know that we have an excellent transportation system in our body? One of our vehicles is the red blood cell, the carrier of oxygen, which consisted of many hemoglobins. The hemoglobin…By: Youth Thalassemia Operation