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Eleni Platokouki-Komitopoulou

Coordinating Director of the Bleeding Disorders Unit and the Haemophilia Center for Children and Adolescents

“Agia Sofia” Children's Hospital, Athens

Haemophilia is a rare hereditary disease. Typically, the male gender is affected. It is due to deficiency of coagulation factor VIII or IX (Haemophilia A or B, respectively) caused by the damage of the corresponding gene. It is clinically expressed with bleeding, mainly in the joints (hemarthrosis) and muscles (hematomas). Knee, ankle and elbow joints are the most common locations. Frequent bleeding at the same joint makes it a target joint and vulnerable to arthropathy. Hemophilic arthropathy is the result of numerus damages on a joint. The result is disability. The aim of therapeutic treatment is not only to treat (treatment on demand), but also the avoidance of bleeding in joints (prophylactic treatment), to avoid hemophilic arthropathy. Although drug therapy is important in haemophilia, disease management is not limited to it. The aim is, in addition to providing safe and effective treatment, to address all the problems of people with haemophilia, where many specialties are involved (orthopedic, physiotherapist, dentist, psychologist, etc.), in order to achieve the best possible quality of life for the child or adult with haemophilia and their families.

Worldwide, people with haemophilia are monitored at Haemophilia Centers because, due to the rarity of the disorder and concomitant problems arising from both the disease and the treatment, long-term experience of team of experts is required as well as the ability to retrieve patient data. Stable, regular, sincere cooperation with the Center ensures constant updating and timely response.

Complementary sources of information are welcome and useful, if they are a starting point for discussion with Haemophilia Center specialists. For many decades, people with haemophilia lived in obscurity, many misunderstandings accompanied the disease, many obstacles and many difficulties had to be overcome. Knowledge is a prerequisite for understanding and acceptance. The internet is today an endless source of information. This website that has the ambition to enrich and expand areas of interest, update information, target not only people with haemophilia, but also community stakeholders (educators, coaches, employers, etc.) seems to be a useful tool for everyone. If the information leads to knowledge, the benefit will be great for everyone.

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