“Awareness is slowly changing the perception of this disease. Knowledge and education are key factors for stronger support of people with congenital bleeding disorders," said Martin Bohůn, president of the Czech Society of Hemophilia.
Hemophilia is a blood clotting disorder caused by a deficiency of blood clotting factors. Hemophiliacs bleed longer than healthy people after injuries or surgeries and are also at risk of bleeding into joints or muscles with no apparent cause or after a minor injury. If the bleeding affects the nervous system, respiratory system, or digestive system, the patient may lose his or her life. Hemophilia is treated by supplying the missing clotting factor.
Hemophilia in the vast majority of cases affects men, in women, it appears rarely. However, due to the presence of a defect in the gene, they can pass the disorder on to their offspring as carriers. It is estimated that there are over 400,000 people living with the disease worldwide, and there are currently over 1,000 patients in the Czech Republic, a quarter of whom are children.