The crowd roared as Stanley Joewono, a fashion and lifestyle Influencer in Indonesia,  crossed the finish line at the Jakarta Running Festival, completing his first-ever 5K race. His heart pounded—not only from the physical exertion but from the significance of the moment. For most participants, it was just another fitness goal, but for Stanley, it marked a deeply personal triumph.

“This is just the beginning—I’m ready for more and can’t wait to raise #thalassemiaawareness even more through my running journey,” Stanley wrote in his Instagram post.

Stanley’s battle began at just eight months old when he was diagnosed with beta-thalassemia major, the most severe form of the disease. His bone marrow could not produce sufficient red blood cells, leaving him dependent on regular blood transfusions to survive. Every few weeks meant another hospital visit and another financial and emotional burden for his family.

The Challenges of Thalassemia

Beta thalassemia major can lead to serious complications if untreated. According to Hopkins Medicine, the spleen, liver, and heart may enlarge, while bones become brittle and deformed. Patients often face iron overload from frequent transfusions, which can lead to heart failure in adolescence or early adulthood.

The cost of managing transfusion-dependent beta thalassemia (TDT) is considerable. In the U.S., the annual expenses for blood transfusions and iron chelation therapy can reach up to $75,000. Fortunately, in Indonesia, these costs are covered by the national healthcare system.

Despite the fatigue and challenges imposed by his condition, Stanley refused to let thalassemia define him. He pursued an active lifestyle—cycling, jogging, and training at the gym. Exercise became a way to regain control over his life, even when the odds felt overwhelming.

Breaking the Chain of Thalassemia

Stanley’s greatest fear, however, was not his own health—it was the possibility of passing the disorder on to his children. Thalassemia is inherited, and if both parents are carriers, there is a significant chance their children will inherit the disease.

When Stanley met Lita, the woman who would become his wife, this fear weighed heavily on him. Before they could plan a future together, they had to address the genetic risk. “I asked Lita my wife to get screened first. And thank God, the result showed she isn’t a carrier,” Stanley recalls with relief. This discovery was a turning point—the chain of thalassemia that had affected his family for generations would end with him.

#TheEarlierTheBetter

The Earlier The Better

With this newfound freedom came a sense of responsibility. Stanley is now committed to raising awareness about the importance of early screening to prevent thalassemia. “I invite everyone to get involved and get tested as soon as possible, because the earlier, the better,” he advises.

“For those unsure about where to get screened, I recommend NALEYA Genomics. They provide Indonesia’s first next-generation sequencing (NGS)-based genetic screening,” he says. Based on his experience, he suggests the NALEYA-THALASEQ test, powered by BGI Genomics.

NALEYA-THALASEQ, developed through a joint venture of BGI Genomics in Indonesia, NALEYA Genomics, uses advanced NGS technology to identify carrier status. BGI Genomics also offers VISTA™ Thalassemiaseq, a globally available test designed to help couples determine their thalassemia carrier status before or during pregnancy. This simple test requires only a small blood sample and provides crucial information for informed family planning.

Stanley’s story is about more than survival—it’s about overcoming fear, breaking limitations, and inspiring others to take action. With each mile he runs and every person he motivates, Stanley knows he is racing toward a healthier, thalassemia-free future.

About VISTA™ Thalassemiaseq

By using Multiplex PCR and Next Generation Sequencing, VISTA™ Thalassemiaseq could detect 4 types of α-thal deletions, 11 types of β-thal deletions, more than 508 thalassemia mutations, and more than 1000 Hb mutations.

About BGI Genomics

BGI Genomics, headquartered in Shenzhen, China, is the world's leading integrated solutions provider of precision medicine. Its services cover more than 100 countries and regions, involving more than 2,300 medical institutions worldwide. In July 2017, as a subsidiary of BGI Group, BGI Genomics (300676.SZ) officially began trading on the Shenzhen Stock Exchange.

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