Tashkent, Uzbekistan (UzDaily.com) -- Every year, on 17 April, at the initiative of the World Federation of Hemophilia (WFH) and the World Health Organization (WHO), World Hemophilia Day is held. In the Republic of Uzbekistan, experts note progress in the fight against this disease.

According to the Tashkent Society of Disabled Persons with Hemophilia at the Beginning of 2020, 1,437 patients with hemophilia A, 164 patients with hemophilia B and 158 patients with von Willebrand disease were registered in the country. The number of detected cases of this disease is increasing from year to year, this is due to an improvement in the country's diagnosis of the disease, an increase in the number of trained laboratory assistants and the availability of reagents.

- The presence of the disease does not affect the overall life expectancy with proper therapy. We hope that after the introduction of so many changes in the fight against this disease in the country, patients with hemophilia who receive adequate treatment will not become disabled, will lead an active lifestyle, have families, receive education, and be socially integrated, said the chairman of the Tashkent Society of Disabled People patients with hemophilia Liliya Zinikova.

Today, a genetically caused disease has been included in the Program “On Measures to Further Improve Medical and Social Assistance to Children with Rare and Other Hereditary Genetic Diseases” and received state funding for the purchase of blood coagulation factors for children under 18 years of age with hemophilia.

At the same time, diagnostics have begun in the country to identify patients whose treatment with blood coagulation drugs does not help. Patients with this form of the disease need special treatment and prophylaxis with the drugs indicated for this form of the disease. Thanks to the activities of hematologists, for the first time in the country, a national clinical protocol for hemophilia, including inhibitors, has been developed, which is currently approved by the Ministry of Health of the Republic of Uzbekistan. Decisions for the management of patients with hemophilia are made up of the medical part - projects with patient organizations, educational projects for doctors: schools, seminars, conferences, as well as providing access to products for patients: protocols and forms. The Tashkent society of disabled people with hemophilia has been operating for about twenty years, in the near future, it is planned to create such organizations in all regions of Uzbekistan, and organize the activities of the society at the republican level.

Hemophilia is a rare disease associated with impaired blood coagulation. With this disease, a person experiences hemorrhages even with minor injuries. In severe patients, hemorrhages in the joints and muscle tissue often occur. The disease is considered incurable, but the patient's condition can be maintained at an acceptable level by injecting the missing coagulation factor.

The main problem of people with hemophilia is that they do not produce enough so-called coagulation factor VIII in their bodies. This is a special protein that is responsible for blood coagulation. And in order to avoid life-threatening complications, patients need regular injections of coagulation factor VIII, IX. The more severe the disease, the more often such procedures are required.