World Haemophilia Day is commemorated on 17 April. On the initiative of the Slovak Haemophilia Association, more than 30 important buildings and monuments were lit up in red on Monday. Among them is also Presidential Palace - Grasalkovic Palace or the SNP Bridge in Bratislava. In Slovakia, there are approximately 700 more patients with blood clotting disorders every year. This is based on data from the National Centre for Health Information (NCZI). TASR was informed about this by its spokeswoman Veronika Danicova on the occasion of Monday's World Haemophilia Day. "The number of newly diagnosed patients with haemophilia and other bleeding disorders is relatively stable. In recent years, it has been around 700 people a year," she said. In Slovakia, according to NCZI data, 6752 patients with haemophilia and congenital or acquired bleeding disorders are regularly monitored. "However, there is an unflattering upward trend in the number of deceased patients who have been monitored for haemophilia," Daničová explained, adding that in 2013, 16 patients died, while in 2021 there were 81 patients.
Haemophilia is an incurable disease that manifests itself as a blood clotting disorder. It occurs predominantly in men because the gene for this clotting factor is located on the X sex chromosome, of which men have only one. Occasionally, it also occurs in women, who can pass it on to their sons. Patients with congenital bleeding disorders are treated in four centres in Slovakia, in Bratislava, Martin, Banská Bystrica and Košice. They receive basic treatment in nearly 40 haematology outpatient clinics. The Slovak Haemophilia Association is also involved in improving access to modern treatment and living conditions for patients. Treatment of haemophilia is now more effective. Because of better diagnosis and quality of medical care, patients suffer less joint involvement and live to older ages than in the past. This has been highlighted by the National Health Portal "While in 1900 haemophiliacs lived on average only 11 years and in the early 1950s 19 years, today, thanks to modern treatment, the life expectancy of haemophiliacs is almost the life expectancy of the rest of the population," Danicova added.
Haemophilia is also referred to as the disease of kings. According to a doctor and member of the Slovak Haemophilia Association Tomas Simurda, Queen Victoria of England was a better known carrier. "The genetics of haemophilia also significantly influenced the politics and history of Europe, as the descendants of King Victoria (the so-called mother of Europe) ruled in royal houses not only in England, but also in Germany, Spain and Russia," Simurda recalled.
Source: TASR, Aktuality.sk
