Today is World Hemophilia Day, a disease that alters the proper clotting of blood and currently affects more than 400,000 people worldwide. As the Spanish Federation of Hemophilia (Fedhemo) reminds us, only 25% of them receive adequate treatment to combat it. For this reason, the World Federation of Hemophilia (WFH) commemorates this ailment every April 17, in memory of the day of birth of the founder of the association (Frank Schnabel), with the aim of raising public awareness of the need to make progress in its treatment and make it accessible to all those who suffer from it. As the WFH reminds us, the gap between developing and developed countries to obtain a cure for this type of coagulation disorders is very wide, so we must fight to ensure equity in its reception.
Hemophilia is detected when, due to a lack of a necessary protein in the blood, it does not coagulate properly and joint or muscle bleedings (hemorrhages) appear, which can be very harmful. In Spain, some 3,000 people suffer from hemophilia A or B, and more than 1,500 people have other coagulation disorders. According to experts, 20% of Spanish sufferers are under 20 years of age, and most of them are men, although women are the main transmitters.
Adult patients, over 40 years of age, are susceptible to other added ailments such as chronic daily pain or mobility problems. According to a study presented by HERO this week (in which patients from 10 countries, including Spain, participated), 42% of adults with hemophilia quit their jobs due to constant joint problems, as they have to visit the doctor two or three times a month and find it difficult to keep their jobs.
Treatments for hemophilia have come a long way in recent years. As a result, children and adults who now suffer from the disease can be cured quickly and lead practically normal lives, something that has not been the case for adults who have suffered from the disease for years. According to the experts, Spain is at the forefront of Europe in terms of patient adherence to current treatments thanks, above all, to the responsibility of young people in complying with the therapies, which are administered in three sessions per week.