What help can patients with hemophilia and Willebrand’s disease receive – explains the National Health Service
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In Ukraine, according to the Electronic Health Care System, 1,484 patients with hemophilia and 316 patients with Willebrand’s disease are registered. The National Health Service explained to “Ukrainian Pravda. Life” what kind of disease it is and what help patients can get. What is hemophilia Hemophilia is an orphan disease in which blood loses its ability to clot. The life and health of patients with hemophilia depends on blood clotting drugs. Classical hemophilia types A and B are mostly affected by men. A woman is only a carrier of a mutated gene. What you should know about Willebrand’s disease However, women can have Willebrand’s disease, which is also associated with blood clotting problems. In women, the course of the disease is more complicated due to menstruation. There are a total of 316 male and female patients in Ukraine. And the most in Lviv Oblast – 65 and in Kyiv – 60. Willebrand’s disease is also a hereditary blood disease characterized by spontaneous bleeding, as in hemophilia. The myth that only men suffer from hemophilia and related diseases has caused the detection of the disease among women to be quite low. According to statistics, 7 out of 10 patients with Willebrand’s disease diagnosed in the world are women. In Ukraine, only one out of 10 patients is diagnosed. The largest number of people diagnosed with Willebrand’s disease were registered in Lviv region (65) and Kyiv (60). In third place is Dnipropetrovsk region, where the disease was detected in 29 patients. Photo: An injection system that promotes blood clotting. Photo: Andreas Bemeleit/Wikipedia Willebrand’s disease is threatened by spontaneous bleeding: intestinal-gastric; renal; hemorrhages in the brain; uterine There is a possibility of bleeding in the joints. Without medical intervention, the probability of stopping such bleeding is low. The main symptoms of hemophilia and Willebrand’s disease are prolonged post-traumatic bleeding; frequent long nosebleeds; bleeding gums when teething; the formation of a significant number of bruises without injury; significant post-traumatic hematomas; prolonged menstrual bleeding in women (from 7 to 14 days). Diagnosis and treatment The family doctor, therapist or pediatrician should collect information about what the patient’s family has been sick with and whether there has been bleeding. However, it should be taken into account that about 30% of patients may not have a hereditary history of bleeding, they will be the first detected in the family. The primary care doctor can give referrals for the following studies: coagulogram; the level of functionality of the Willebrand factor; level of blood coagulation factor VIII. The patient can have such tests done free of charge in specialized institutions that have a contract with the National Health Service for outpatient care. Adult patients can undergo diagnostics at the Institute of Blood Pathology and Transfusion Medicine of the National Academy of Medical Sciences of Ukraine (Lviv). Children – in the National Children’s Specialized Hospital of the Ministry of Health of Ukraine Okhmatdyt (Kyiv). If the primary care physician sees abnormalities in these tests, he should refer the patient to a hematologist. The hematologist will consult the patient and give referrals for special hemostasis studies. This study will help establish the diagnosis and type of hemophilia. What to do if Willebrand’s disease is diagnosed? Sign up for dispensary registration with a hematologist at the regional hospital. For informational support, contact the BF “Children with Hemophilia”: 067-246-24-57 or 099-430-57-99. Regarding free medical services within the scope of the Medical Guarantee Program, call the contact center of the National Health Service at number 16-77. Where to get treatment for free Severe forms of the disease require preventive treatment. To prevent spontaneous bleeding, injections of a blood coagulation factor are administered intravenously. In moderate and mild forms, the blood coagulation factor is administered after the injury. With constant prophylactic administration of drugs, patients can lead a full-fledged lifestyle and avoid the risk of disability. Treatment and medical support at all stages is free under the Medical Guarantee Program. Expensive drugs are provided to patients by the state through centralized procurement. The treating physician for a patient with hemophilia is a hematologist. He accompanies and adjusts the therapy. A patient can receive medical care from a hematologist in medical facilities that have a contract with the National Health Service for outpatient care. If the patient needs hospitalization or surgery, this medical care is also free of charge. Read also: Incessant blood: is there a chance to diagnose hemophilia in Ukraine
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