Be an Agent of Change to Fight Thalassemia

On May 26 2024, Tzu Chi Hospital held a health workshop with the theme "Be Aware, Share and Care about Thalassemia" at the Tzu Chi Hospital Auditorium, Pantai Indah Kapuk, Jakarta. This event was held to commemorate Thalassemia Day on May 8. A total of 92 participants took part in this workshop, consisting of medical personnel from hospitals and health centers in the Jakarta area and surrounding areas.

"Hopefully this morning's event will be useful for the wider community to know about thalassemia, because Indonesia is included in the thalassemia belt. "There are many cases of thalassemia in the community and some of them have not been detected because perhaps one of the reasons is knowledge about this disease itself," said Dr. Suriyanto, Medical Director of Tzu Chi Hospital.

The event opened with a shou yu performance or hand sign language demonstrated by Tzu Chi Hospital medical volunteers. Performing a Mandarin song entitled "让爱传出去" which means "Let Love be Spread", the lyrics in the song inspire to share universal love and kindness with others in the world.

This workshop presents speakers who are experts in their fields, namely Dr. Anky Tri Rini Kusumaning Edhy, Sp.A, Subsp. HO, Consultant Pediatrician, Pediatric Hematology Oncology Consultant; Dr. Edi Setiawan Tehuteru, Sp.A, Subsp. HO, M.H.A, Head of the Blood Stem Cell Transplantation Team and Pediatrician, Consultant Hematology, Oncology, Pediatrician; Dr. Reganedgary Jonlean, General Practitioner, Head of Thalassemia Transfusion; and Ns. Hestu Anggraini, S.Kep, Thalassemia Unit Nurse.

The material discussed is quite complete regarding what thalassemia is, how the process of hematopoietic stem cell transplantation in thalassemia occurs, detection and management of thalassemia, as well as thalassemia nursing care and blood transfusion procedures. Interestingly, participants were also invited to be actively involved in group discussions and discuss a number of case studies related to thalassemia.

 

Thalassemia is not an obstacle to progress

This event also invited thalassemia survivors to share inspirational and motivational stories, namely Caecillia Maria Natasha and Fadel Nooriandi from the Thalassemia Movement community. Caecillia Maria Natasha, or who is familiarly called Tasha, was diagnosed with thalassemia when she was one year old. This disorder caused little Tasha's face to turn yellow and her head to be bigger than it should be. At that time, Tasha said, in 1995 thalassemia was still very rare so she received various diagnoses, ranging from jaundice to what was thought to be hydrocephalus.

"At that time, I was finally checked because my Hb was low, around 3 or 4, I was screened more deeply, and finally it was discovered that I had beta thalassemia major," said Tasha.

Fadel also shared the story of how he was diagnosed with thalassemia at the age of 8 months. "When my mother was diagnosed with thalassemia, I was confused, because technology was not as sophisticated as it is now. I was taken to Singapore but I couldn't find any results. It turned out that when I met one of the doctors everything was checked, it turned out I had thalassemia. At first my mother was confused about what thalassemia was, because she was told to have a blood transfusion every two weeks. Then when they explained what thalassemia was, my mother and father were immediately screened too. It was only then that I was diagnosed with thalassemia major. "But, thank God, I have a younger sibling who is only a carrier of the thalassemia gene," recalled Fadel, who is now almost 31 years old.

Growing up with thalassemia, Tasha and Fadel experienced bullying because of their different physiques and often missed school for blood transfusions. "I used to have a blood transfusion that didn't come in for a week and that caused a lot of talk from my friends. Moreover, in high school, many people didn't know about thalassemia, and they were often told that 'Tasha is a truant, Tasha is a teacher briber, she often doesn't go in but her grades are good'. That's where I felt my lowest point, but that's also where I had the determination that I would prove to people that what they were saying wasn't true. "Praise God, I was able to graduate well, I also got a scholarship, and finally at college I was able to prove to myself that I could achieve my dreams," concluded Tasha. 

Even though they were at their lowest point due to thalassemia, Tasha and Fadel consider thalassemia not an obstacle to progress. On the contrary, it is an opportunity for them to motivate fellow thalassemia survivors and educate the wider community about thalassemia.

"I always say, thalassemia is serious, so don't just let us do it," said Fadel.

 

The importance of thalassemia screening before marriage

Thalassemia is a genetic disease that is passed from parents to their children. This disease is difficult to control because some people who carry thalassemia have no symptoms, but there is still a risk if they marry someone who carries the trait.

However, thalassemia carriers can be detected by thalassemia screening. Dr. Anky emphasized that early detection is important, especially for those who have family members with thalassemia. Thalassemia screening should also be carried out by couples before marriage. 

"A carrier who marries a carrier of the trait is likely to give birth to a child who has thalassemia major, this is what we have to break the chain of. If we can detect it early, even though Indonesia is included in the thalassemia belt, with screening we can reduce the number of children who suffer from thalassemia. So, before getting married, get checked," said Dr. Anky.

Until now, thalassemia cannot be cured, but it can be prevented by screening for thalassemia. By understanding the importance of screening for thalassemia before marriage, we are also supporting efforts to break the chain of thalassemia in Indonesia.

 

The first blood stem cell transplant for thalassemia in Indonesia

Most people think that thalassemia treatment is limited to blood transfusions plus iron chelation. However, advances in medical science provide new hope for treating thalassemia through blood stem cell transplantation.

Tzu Chi Hospital will be the first hospital in Indonesia to perform stem cell transplants on children with thalassemia at the end of 2023. Currently, Tzu Chi Hospital has successfully carried out transplant procedures on two child patients, namely Assyifa and Lynn.

"We have to admit that currently in Indonesia, the only hospital that has facilities for blood stem cell transplants specifically for children is Tzu Chi Hospital," said Dr. Eddie.

Establishing the first Blood Stem Cell Transplantation Installation for children in Indonesia is one of Tzu Chi Hospital's commitments to providing international standard health services. The hope is that Indonesian people can get the best health facilities without having to go far abroad.