Thalassemia is the most common hereditary chronic anemia disease in the world, including Thailand. About 5.2% of the world's population are carriers of thalassemia and hemoglobin disorders, which means a 1.1% chance in all married couples of having a child suffering from the disorders or 2.7 in 1,000 people. Thus, the control and prevention of severe thalassemia to reduce the number of newborn patients is of great importance.
Roughly 30 to 40 percent of the Thai population is a carrier for thalassemia diseases. Each year, about 9,800 children are born with thalassemia. At present, approximately 430,000 patients with severe thalassemia require regular blood transfusions. From 2015-2017, 446,586 thalassemia patients visited physicians at the Thalassemia Clinic at Nakhon Pathom Hospital, and 1,172 received inpatient care. The clinic was established more than 30 years through a collaboration between the Thalassemia Research Center, the Institute of Molecular Biosciences, Mahidol University, and the hospital’s pediatric ward to educate patients and families on patient care and disease prevention. Academic training is organized annually to increase awareness among families of thalassemia patients and provide information on physical and mental healthcare.
In 2019, the training on the topic "Good quality of life that thalassemia patients can have" was organized with the following
1. To disseminate knowledge and increase the understanding of thalassemia among patients and their families, including building good relationships between groups of patients, relatives, and staff.
2. To promote a good attitude among healthcare workers who work with thalassemia patients.
A lecture was given by physicians and healthcare workers to patients and their caretakers on the prevention and control of genetic disease, while thalassemia patients had the opportunity to share their life experiences. Various gaming activities were organized to build morale and understanding among patients, families, and healthcare workers, fostering good relationships, which improve healthcare service and a better quality of life for the patients.
Thalassemia patients, their caretakers, and the interested public gained knowledge and understanding of thalassemia disease, including medical treatment, care, prevention, and control of genetic disorders. Patients and their caretakers were able to properly care for and lead everyday life. They also understand the importance of early antenatal care (before 16 weeks of gestation), which allows healthcare professionals to advise on the risk associated with having children with Thalassemia, leading to the reduction of costs associated with treatments for families and the Ministry of Public Health and Thalassemia control and prevention in the Nakhon Pathom area. In addition, the activities allowed patients to show empathy and establish a support group for thalassemia patients at Nakhon Pathom Hospital, which helps take care of group members and has the potential to expand into a patient club at Nakhon Pathom Hospital that interacts with thalassemia patients in other hospitals.
Moreover, the Thalassemia Research Center provides genetic counseling to 129 pregnant women and their husbands at the Thalassemia Clinic in Nakhon Pathom Hospital, who are at risk of having children with thalassemia. This includes providing advice to 49 pregnant women who are susceptible to having children with three severe types of Thalassemia for prenatal diagnosis by amniocentesis, aligning with the Ministry of Public Health’s policy related to disease control and prevention. The prenatal diagnosis will significantly reduce treatment costs for thalassemia patients and families.