Hemophilia has been widely recognized among European societies since the 19th and 20th centuries. The disease became particularly prominent when members of the British royal family passed on the mutation to other royal families across Europe. Since then, hemophilia has been increasingly studied and understood as a genetic disorder inherited within families.
“Hemophilia became more widely known because several members of royal families in Europe were affected by it,” said a pediatrician at the Faculty of Medicine, Public Health, and Nursing Universitas Gadjah Mada (FKKMK UGM), Dr. Bambang Ardianto, M.Sc., Ph.D., Sp.A(K), on Friday (Apr. 17), in response to World Hemophilia Day observed on April 17, 2026.
Ardianto noted that hemophilia cases continue to receive attention from researchers and medical professionals as efforts to address the disease intensify. In Indonesia, he explained, patients are often diagnosed only after experiencing significant bleeding episodes.
“Many hemophilia cases are only identified after a child experiences prolonged bleeding. It is usually discovered when bleeding does not stop, for example, after circumcision or minor injuries,” he said.
According to Ardianto, in many cases, procedures such as circumcision performed outside formal healthcare facilities can trigger prolonged bleeding, as no prior assessment of blood clotting conditions is conducted. In addition, other common symptoms include pain and swelling in major joints such as the knees or ankles, which can occur after simple activities like standing for extended periods during ceremonies or school activities.
“These symptoms are often not immediately recognized as signs of a serious condition, even though they are characteristic of hemophilia,” he said.
Ardianto also highlighted that access to hemophilia treatment in Indonesia remains uneven. Not all hospitals have the facilities or hematology specialists to handle such cases, often requiring patients to be referred to larger hospitals with specialized services.
“In hospitals with hematology services, treatment can be provided, but in many regional hospitals, such services may not be available,” he explained.
He added that most hemophilia patients are already covered under the National Health Insurance (JKN) system. However, there are differences in service mechanisms and limitations in providing preventive or prophylactic therapy, which ideally should be administered regularly to prevent recurrent bleeding.
Furthermore, he explained that prophylactic therapy is crucial for patients with hemophilia, as it helps prevent bleeding before it occurs rather than treating it afterward. However, its implementation remains limited due to constraints in funding systems and service distribution.
“Prophylactic therapy should ideally be provided to prevent bleeding, but it has not yet been widely implemented,” he said.
As a result, many patients still rely on treatment during bleeding episodes rather than on more effective long-term prevention.
Beyond medical aspects, Ardianto emphasized the important role of families in the long-term management of hemophilia. Families need to recognize early signs of bleeding, such as joint pain or swelling, and immediately seek medical care to prevent further complications.
“If there are symptoms such as joint pain or swelling, patients should be taken to the hospital immediately for proper treatment,” he stressed.
He also added that families should help manage children’s activities to reduce the risk of injury, for example, by avoiding strenuous sports or excessive physical activities.
On the other hand, hemophilia also has significant psychosocial impacts, particularly on children who must limit their physical activities compared to their peers. This often leads to feelings of difference or social isolation. Therefore, Ardianto explained that hospitals routinely organize educational activities and family gatherings for patients. These initiatives aim not only to improve medical understanding but also to foster a sense of togetherness and emotional support among patients.
“We hold annual gatherings, especially on Hemophilia Day, to provide education as well as psychosocial support for patients and their families,” he said.
Amid the various challenges that remain, from delayed diagnosis and limited healthcare facilities to unequal access to therapy, World Hemophilia Day serves as an important momentum to raise public awareness that managing hemophilia requires collaboration among medical professionals, the healthcare system, families, and sustained public education to continuously improve patients’ quality of life.
Author: Zabrina Kumara
Editor: Gusti Grehenson
Post-editor: Zabrina Kumara
Photo: Freepik