Haemophilia is an inherent lack of important proteins, factor VIII or IX blood coagulation. Because it is missing, the bleeding does not stop and the injury factor should be taken directly into the vein.
Bratislava, November 5 (TASR) – Awareness of the disease itself is important for helping people with haemophilia and other bleeding disorders in their everyday lives. "Patients' relatives and friends should know about his illness and provide him with appropriate treatment in the event of an accident to prevent bleeding" The president of the Slovak association for hemophilia (SHZ) Jaroslav Janovec said.
Haemophilia is an inherent lack of important proteins, factor VIII or IX blood coagulation. Since it is absent, bleeding does not stop, and the injury factor should be administered directly to the vein by injection. Hemophiliacs are most restricted in activities where there is a high risk of injury. "For example, they can not work at altitude, contact sports and so on." Genoa is approaching. According to him, injections with a coagulation factor have patients always among themselves and most can be kept in a vein. Alternatively, it can be done by a trained family member.
According to the President of the SHZ, the treatment of concentrate of blood clotting factors is completely covered by health insurance, but patients can obtain a specialist doctor or stay in a hospital with a child who is hospitalized due to complications of the disease.
Parents of young children with serious complications may receive an allowance for care at the Office of Labor, Social Affairs and Family. Elderly hemophiliacs who have suffered seriously damaged joints, limited mobility or weak muscles in the past due to inadequate treatment are dependent on the individual transport and are entitled to purchase cars and accessories for car or transportation.
Hemophilia is genetically conditioned. This is the most famous but not the only bleeding. In Slovakia, approximately 2,000 patients with congenital bleeding disorders live in Genoa, of which approximately 600 people are affected by haemophilia. Approximately a quarter of patients have the most serious form of illness associated with spontaneous bleeding in the joints and muscles. In general, hemophilia affects 1 in 10,000 people in the world. "Unfortunately, many of them did not diagnose or receive any or only inadequate treatment and died in their youth" says the President of the SHZ.
The Slovak association Hemofiliac currently records 385 patients, is a member of the European Hemophiliacal Consortium and the World Hemophilic Association, which are umbrella organizations for patient associations from different countries that promote their mutual cooperation. According to Janovec, SHZ organizes a number of projects for patients, such as summer rehabilitation of adult living, summer camp for children with haemophilia, or educational stay for parents with newdiagnostic children in pre-school age. Rehabilitation is very important. "Repeated haemorrhage in the joints and muscles causes their injury and rehabilitation helps to improve the condition of the patient's locomotor apparatus" said Janovec. "Another important aspect of our work is the education of patients for disease control, home treatment and adaptation to their illness" he added. In the coming years, SHZ wants to focus attention on women with congenital bleeding disorders that have particular problems. "This trend is being promoted on a global scale," says Genoa.