World Hemophilia Day： Caring for ＂Glass Man＂ to Make Life No More Fragile
Xinhua News Agency, Beijing, April 16th Title: World Hemophilia Day: Caring for "Glass Man" to Make Life No More Fragile.
Xinhua News Agency reporters Li Heng and Gu Tiancheng
Wrestling, slipping, minor scratches, and even careless collisions when walking may make a "minority" group bleed … … Behind these unbearable pains of ordinary people is the normality of hemophiliacs.
April 17th, 2023 is the 35th World Hemophilia Day. The theme of this year’s event is "accessible to all: prevention of bleeding". Experts call for improving the concern and support of the whole society for hemophilia, scientifically preventing and treating bleeding, optimizing prevention and treatment strategies, improving standardized diagnosis and treatment ability and care management level, and promoting everyone’s access to treatment.
Care for people who are prone to bleeding.
Xiao He, 15 years old, is a hemophiliac. His daily bumps and wrestling are "like enemies". He has been suffering from illness for years, and the expensive treatment costs have caused a heavy family financial burden and mental stress.
Hemophilia is a group of hereditary hemorrhagic diseases with coagulation dysfunction caused by the lack of coagulation factors, and it is also a birth defect disease that seriously harms health. It is one of the rare diseases. Therefore, hemophiliacs are also called "glass people". According to the data of China Rare Diseases Alliance, the prevalence rate of hemophilia in China is 2.73 per 100,000.
According to experts, hemophilia is not a fatal disease, mainly manifested as spontaneous bleeding or bleeding after minor trauma, hematoma formation and joint bleeding. Repeated bleeding of weight-bearing joints such as knees, ankles and muscles can lead to joint swelling and muscle necrosis, which in turn leads to joint deformity, muscle atrophy and even limb disability.
According to the different types of coagulation factors, hemophilia is mainly divided into hemophilia A and hemophilia B. Hemophilia A is the most common in clinic, accounting for 80% to 85%. Hemophilia is a recessive inheritance linked with chromosome, and the incidence is related to gender. Generally, men are sick, and women are mostly carriers of pathogenic genes.
In response to the prevention and treatment of birth defects such as hemophilia, the relevant person in charge of the Department of Maternal and Child Health of the National Health and Wellness Commission said that it is necessary to rely on pre-marital health care institutions, prenatal screening and diagnosis institutions, hemophilia designated diagnosis and treatment institutions and maternal and child health care institutions at all levels to carry out extensive publicity and education for the target groups such as newly married, pregnant and pregnant women, optimize prevention and treatment services, guide the public to improve their health literacy, take the initiative to accept services, and effectively prevent birth defects.
Prevention and treatment is the first choice for children with hemophilia.
In March of this year, the National Health and Wellness Commission released the core information of health education for the prevention and treatment of hemophilia, which showed that hemophilia was born and accompanied for life. At present, there is no mature radical cure method, and coagulation factor replacement therapy is the main treatment, so it is extremely important to prevent bleeding after injury, especially intracranial hemorrhage.
According to experts, hemophilia patients often suffer from childhood, and do not necessarily have a clear family history. Joint swelling and pain is one of its common manifestations, and it is easy to be misdiagnosed due to lack of understanding. Children, especially male children, have recurrent unexplained joint swelling and pain and movement disorder, especially after the activity, so we should attach great importance to it and seek medical advice in time to avoid missed diagnosis and misdiagnosis.
How to better prevent and treat hemophilia in children? Wu Runhui, director of the Second Department of Hematology, Beijing Children’s Hospital affiliated to Capital Medical University, said that childhood is the golden age of hemophilia treatment. Children should be treated as early as possible, adequately and for a long time. Preventive treatment is a targeted treatment that is widely used in children with hemophilia, especially in moderate and severe groups. Preventive treatment, also known as regular replacement therapy, is regular replacement therapy before bleeding, that is, regular infusion of coagulation factor preparation to maintain the content of coagulation factor at a relatively safe level, so as to prevent bleeding and joint injury and reduce the disability rate.
"With the changes in the concept of hemophilia treatment, the demand for treatment is also escalating." Zhou Min, director of the Department of Hematology Oncology of Chengdu Women and Children Central Hospital, said that in the future, the choice of treatment for children with hemophilia will focus on preventive treatment, non-factor preparation and gene therapy. Through individualized preventive treatment, the management of hemophilia will be changed from "saving lives by treating diseases" to "chronic disease management mode", so that children can run and live like normal children and improve their quality of life.
All parties work together to improve the level of diagnosis and treatment of hemophilia
Through the unification of testing standards, we will promote the homogenization management of hemophilia diagnosis, treatment and rehabilitation, and build a standardized, effective and accessible grading diagnosis and treatment platform for hemophilia patients … … In 2020, China Hemophilia Collaboration Group and China Rare Disease Alliance initiated the construction of China Hemophilia Center and formulated relevant standards. By September 2022, there were 235 hemophilia centers in China with 44,830 registered cases.
Yang Renchi, Chairman of the Hemophilia Group of China Rare Diseases Alliance and Director of the Thrombosis and Hemostasis Clinic of the Hematology Hospital (Institute of Hematology) of China Academy of Medical Sciences, introduced that the China Hemophilia Center is divided into hemophilia Treatment Center, Hemophilia Clinic and Hemophilia Comprehensive Management Center to provide comprehensive care, daily treatment and disease education for hemophiliacs.
"These centers can truly implement the diagnosis and treatment of hemophilia in strict accordance with the unified standards set, benefiting more hemophiliacs." Yang Renchi expressed the hope that through the demonstration effect of these centers, more hemophilia centers in China will be driven to actively declare that they have reached the established standards, so as to truly realize the goal of "localized management and homogeneous diagnosis and treatment" for hemophilia prevention and treatment.
In the interview, the reporter learned that the country has included hemophilia in the first batch of rare disease catalogues, the protection and management of children’s blood diseases and the scope of centralized treatment of serious diseases, and included related therapeutic drugs in the national medical insurance catalogue, and established and improved the national collaborative network for diagnosis and treatment of rare diseases to strengthen the standardized diagnosis and treatment, treatment and management of hemophilia patients.
At the same time, china charity federation, China Women’s Development Foundation, China Blood Friends Home and other charitable organizations actively participate in publicity and education, child rescue and other related work, and work together to improve the level of assistance for children with hemophilia.
Guan Tao, president of China Blood Friends Home and chairman of Beijing Blood Friends Home Care Center for Rare Diseases, called for more people to pay attention to hemophilia groups, raise public awareness of hereditary hemorrhagic diseases, light up the world of hemophiliacs with love, and make their lives shine brilliantly.