There will be satellite centers for treating hemophilia.

Hemophilia, also known as blood clotting disorder, is a rare genetic disease. In Khanh Hoa province, the management and treatment of patients with this disease have been well-implemented by Khanh Hoa General Hospital for many years. As a result, the hospital was selected by the National Institute of Hematology and Blood Transfusion as one of the units in a project aimed at establishing 10 satellite centers for basic hemophilia care and treatment in Vietnam.

Rare genetic disease

Hemophilia is caused by a deficiency in clotting factors, primarily factor VIII or IX. Individuals with the disease are at risk of prolonged bleeding, spontaneous bleeding in joints, muscles, and internal organs, and it can be life-threatening if not treated promptly. Currently, hemophilia cannot be completely cured, but with early detection, treatment, and adherence to the prescribed regimen, patients can live stable lives, study, work, and integrate into the community.

Medical staff from the Hematology and Blood Transfusion Department of Khanh Hoa General Hospital perform hemoglobin testing.

Having lived with hemophilia for over half a century, Mr. Nguyen Van Thua (63 years old, Cam Lam commune) is all too familiar with the pain caused by bleeding in his joints. Mr. Thua said that over 40 years ago, many members of his family showed symptoms of the disease. However, due to limited medical resources at the time, his family didn't fully understand the condition, leading to the deaths of three people from minor injuries. Mr. Thua shared: "Later, after understanding the disease better, I followed the doctor's treatment and lifestyle instructions, and as a result, my health has stabilized significantly." Hemophilia doesn't only affect the elderly; it often manifests very early in children. Ms. Dinh Thi Thanh Huong (Bac Cam Ranh ward) still vividly remembers the time her child suffered uncontrollable bleeding from a small scratch when he was only 5 years old. At that time, local medical facilities didn't have specific medication, and the child had to receive multiple blood transfusions before being diagnosed with factor VIII deficiency. "After receiving thorough advice from the doctor, my family encouraged my child to persevere with the treatment, which helped to prevent many complications," said Mrs. Huong.

In Khanh Hoa , the Hematology and Blood Transfusion Department of Khanh Hoa General Hospital is managing and monitoring 22 hemophilia patients, aged 11 to 64. Over the years, the hospital has implemented a comprehensive range of solutions to improve management and treatment effectiveness, from regular monitoring and long-term treatment counseling to guidance on safe living practices and timely management of bleeding. Notably, since 2020, Khanh Hoa has been supplied with freeze-dried Factor VIII, enabling patients to access effective treatment protocols locally and significantly reducing the need for referrals to other hospitals. In addition to treatment, the hospital regularly organizes thematic workshops for patients and their families, providing guidance on early recognition of bleeding signs, home management, and genetic counseling.

According to Dr. Vo Thi Hong Ha, Head of the Hematology and Blood Transfusion Department at Khanh Hoa General Hospital, hemophilia is a lifelong disease, therefore counseling and communication play a particularly important role. “We provide very specific guidance to patients on daily activities, safe exercise, and how to avoid collisions. The goal is to help patients proactively protect themselves, minimizing bleeding episodes and long-term complications,” Dr. Hong Ha stated.

Sustainable steps

It is estimated that Vietnam currently has approximately 6,000 people with hemophilia and over 30,000 carriers of the disease gene, yet only about 40-45% receive regular diagnosis and treatment. This reality highlights the urgent need to expand the treatment network and bring specialized medical services closer to patients through the establishment of satellite hemophilia treatment centers in various localities.

The Hematology and Blood Transfusion Department conducted a communication and counseling session on hemophilia for patients with this condition.

In the strategy to establish 10 satellite centers of the National Institute of Hematology and Blood Transfusion, Khanh Hoa General Hospital is considered to have many favorable conditions to develop into a hemophilia satellite center for the South Central region. This is because it is the provincial-level hospital, with comprehensive development in all specialties, a strong foundation in hematology and blood transfusion, a well-trained workforce, and practical experience in managing and treating hemophilia patients. According to Dr. Nguyen Thi Mai, Director of the Hemophilia Center at the National Institute of Hematology and Blood Transfusion, choosing Khanh Hoa to build a satellite center not only aims to reduce the burden on higher-level hospitals but also helps patients receive early diagnosis, timely treatment, and long-term monitoring right where they live. “Satellite centers not only provide treatment but also play a crucial role in communication, screening, and genetic counseling. When patients are well managed, they themselves become a bridge to help identify more high-risk cases within their families,” emphasized Dr. Nguyen Thi Mai.

According to Dr. Vo Thi Hong Ha, in order to become a hemophilia satellite center, the hospital is making comprehensive preparations, from in-depth training for doctors, nurses, and related departments, to perfecting patient management procedures, developing the field of rehabilitation, and strengthening communication and regular counseling activities. At the same time, it is training grassroots healthcare workers to improve their ability to early identify, monitor, and provide initial treatment for suspected cases.

The establishment of a hemophilia satellite center in Khanh Hoa is expected to open a new direction in the care of hemophilia patients in the South Central region, helping patients reduce the burden of travel and costs associated with treatment far from home. More importantly, this is a strategic step that contributes to improving the quality of treatment, life expectancy, and quality of life for people with hemophilia.

C.DAN

Source: https://baokhanhhoa.vn/xa-hoi/202601/se-co-trung-tam-ve-tinh-dieu-tri-hemophilia-d7c79ff/