Beyond bleeds: the power of partnership in hemophilia

The Hemophiliacs Association has prepared an exhibition entitled Women and Girls Bleed Too, which will be on display at Kongresni trg until the end of the month.

Why do many cases of haemophilia in India go undiagnosed? Doctor explains

Even as diagnostic technology advances and public health awareness grows, haemophilia, a genetic bleeding disorder, remains underdiagnosed in India, with only an estimated 15-20% of cases officially diagnosed. Haemophilia is typically caused by abnormalities in genes that encode clotting factors, which are proteins required for blood coagulation. It appears as prolonged or spontaneous bleeding episodes. The chronic nature of the disorder takes i…

Beyond bleeds: the power of partnership in hemophilia

Perspectives from Martin Nielsen, Denmark, who lives with hemophilia B, and Wolfgang Miesbach, professor of medicine at Frankfurt University Hospital, Germany, on the psychological impacts of hemophilia.

The bleeding disease occurs almost exclusively in boys and men. With very few exceptions. Vanessa Link, 21, is one of them. She doesn't get undercut by hemophilia A. She has a cat. Makes strength training and inline skating. Her fifth tattoo will certainly not be her last. With her boyfriend she wants children at some point. Sounds completely normal for a young woman. Only that the life of Vanessa Link is anything but normal.Hemophilia A is a mo…

On the occasion of World Hemophilia Day, which is celebrated every 17 April, the Hemophilia Foundation organized several activities to raise awareness about coagulation disorders and strengthen the community of affected people.This year, the campaign focuses especially on highlighting the difficulties faced by women with hemophilia and related disorders.

“Hemophilia is a hereditary disease that binds to the X chromosome. It mainly affects men, women tend to be carriers. People with blood clotting disorder are faced with a deficiency of the so-called coagulation factor, which causes spontaneous bleeding in muscles or joints,” explains Dr. Eva Drbohlavová from the Center of Clinical Hematology of the Regional Hospital Liberec. It was spontaneous bleeding that previously led to disability. “Repeate…