April 17: International Day of Hemophilia
Lithuanian ‘Life Without Bleeding’ patient Gitis Kirvela shared their experience with Georgian patients in a conference dedicated to the International Day of Hemophilia, held under the auspices of the Hemophilia and Donor Association and organized by the K. Eristavi National Center for Experimental and Clinical Surgery and Clinic ‘New Life.’ The conference aimed at informing the public about the necessity of access to hemophilic treatment.
Hematologists, experts and patients took part in the conference to once again summarize the current problems surrounding hemophilia and to highlight the gravity of disease management and access to treatments with modern methods.
Topics discussed at the conference included novelties in the treatment of hemophilia, modern methods of laboratory research of bleeding pathologies, physical therapy in countries with limited resources, dental treatment in patients with hemophilia, the role of donor plasma in hemophilia treatment.
Special guest Professor Robert Clamrot from Germany, Head of Hemophilia and Angiology Center in Vivantes (Berlin), introduced the audience to hemophilia A inhibitory treatment in Germany and around the world. Another special guest was Gitis Kirvela, Member of the Lithuanian Hemophilia Association, who shared her experience with Georgian patients in a speech titled, "life without bleeding".
On the initiative of the World Federation of Hemophilia, the International Day of Hemophilia has been celebrated annually since April 17, 1989. The goal of this day is to increase public interest in and awareness of the disease. Hemophilia is a congenital disease which manifests in men, while woman are carriers of the disease. People with disease have problems with blood clotting and tend to bleed excessively. Hemophilia can drastically degrade the quality of life of sufferers, as well as their families, friends and caregivers.
Today, the management of hemophilia is simpler than even a few years ago. The focus is on prophylactic treatment that provides a way to not only stop the existing bleeding, but to make bleeding occur less frequently. Prophylactic treatment allows patients full integration into society and to improve their quality of life. The treatment of hemophilia in Georgia is financed by a state program to ensure patients do not die from bleeding caused by hemophilia. However, prophylactic treatment is not yet available and joint work is ongoing to solve this problem.
Information about the disease:
There is a myth that hemophilia is a "royal disease" and people suffering are associated with royal branches. The myth comes from the fact that Queen Victoria was the carrier of the hemophilic gene, and accordingly her children suffered from it. Because of the lack of information on hemophilia, the myth was spread that the disease came from royal families.
397 people suffer from hemophilia and other bleeding pathologies in Georgia, with a worldwide statistic of one in every 10 thousand men. Nowadays, according to the World Health Organization, 400,000 people live with this disease in the world. Today, the management of hemophilia is simpler, there are already modern possibilities to diagnose and detect this disease at the earliest stage, with prophylactic treatment able to give positive results for patients.
By Mariam Merabishvili