April 17 - World Hemophilia Day - a day that reminds us of the needs of those living with this rare disease and an opportunity to reflect on the path that patients, doctors and the health care system have gone through to talk about it not as a sentence, but as a challenge that can be lived with. Poland has made tremendous progress in treatment in recent years. However, there are still challenges that hemophilia patients face on a daily basis.
- For us, the most important thing is safety, ensuring access to treatment anywhere in the country, both in scheduled and emergency situations. The National Hemophilia Treatment Program provides very good access to medication. In an emergency situation, clotting factors are provided free of charge to any place where it is necessary, to any hospital where a hemophilia patient finds himself due to an emergency or elective surgery. This is the basis of our safety," noted Bogdan Gajewski, president of the Polish Association of Hemophilia Patients.
Hemophilia doesn't have to shorten life. Patients fight for its good quality
In Poland, about 6,000 people suffer from hemophilia and related hemorrhagic diathesis. - It's a genetic disease, meaning it's most often inherited, but in about 30% of cases genetic mutations occur de novo, meaning hemophilia appears in a family where it didn't occur before. The biggest problem is strokes (bleeding), most often in the muscles and joints. The hemorrhages can occur not only after an injury, but also for no apparent reason: for example, the patient goes to sleep and gets up in the morning with a hemorrhage. Repeated bleeding leads to joint destruction and progressive disability. Some bleeding can be very dangerous, even life-threatening, e.g. to the central nervous system, gastrointestinal tract, so it is necessary to act quickly," said Prof. Pawel Laguna, head of the Department of Pediatric Oncology, Hematology, Clinical Transplantation and Pediatrics at UCK WUM, consultant in pediatric oncology and hematology for the Mazovian province
Improving treatment means that today the life expectancy of a hemophilia patient is not necessarily different from that of a healthy person. - The primary form of treatment is prophylactic treatment, which protects against bleeding. As a result, children with hemophilia who receive prophylactic treatment from the beginning can live and function normally. The new World Federation of Hemophilia (WFH) definition of prophylaxis says... To gain access to the complete English section of the Medexpress.pl, kindly reach out to us at [email protected].Content locked
