The Spanish Federation of Hemophilia (Fedhemo) recalled yesterday, on the occasion of the celebration of World Hemophilia Day, that only 25% of people with this disease in the world receive adequate treatment.
The hemophilia, is an inherited disease linked to the X chromosome, which is not spread and affects one in every 10,000 born. It is suffered only by men, and women can only be carriers of it.
In a Press conference held in Madrid, the president of Fedhemo, José Antonio Muñoz, has pointed out that they add to the objective of the World Federation that aims to ensure that all people can access adequate treatment.
Today's parents know that their children with hemophilia will reach adulthood, but this is not the case in other parts of the world where 75% of people with hemophilia have no or very precarious treatment. This is what the president of Fedhemo.
The hemophilia It is a bleeding disorder in which the blood lacks an essential protein that does not allow it to clot properly, so bleeding can be very serious. In the world there are 400,000 people with hemophilia, while in Spain there are about 3,000 people diagnosed with hemophilia type A or B and more than 1,500 people with other bleeding disorders.
The severity of coagulation disorder A person usually depends on the amount of clotting factor that is missing or not working properly. People with hemophilia they may suffer from uncontrolled internal bleeding as a result of a seemingly minor injury. Untreated hemorrhages in joints and muscles cause severe pain and disability, those produced in major organs, such as the brain, can cause death.
In our sanitary system, you specified the President of Fedhemo, an optimal hemophilia treatment is the most cost effective option for the patient and for the Public Administration. The crisis should not diminish our quality of life and it is necessary to work together to have a comprehensive treatment. further Munoz He pointed out that in order to defend and represent the rights of people with hemophilia and other coagulopathies, dialogue with the Administration and with health workers must be encouraged, education must be provided and psychosocial support must be offered to sensitize the whole society.
