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World Hemophilia Day: How are adult patients treated?

World Hemophilia Day: How are adult patients treated?

World Hemophilia Day, celebrated on April 17, stimulates reflection on the treatment regimen of patients. Although only 6000 people suffer from the disease in Poland, they need comprehensive care to live normally. What is the treatment of hemophilia?

Hemophilia is a congenital bleeding disorder, that is, a tendency to bleed excessively. People with hemophilia do not bleed faster than others, but they may bleed longer. It is associated with the formation of painful hemorrhages and subcutaneous hemorrhages, which can lead to permanent organ damage. A poorly treated disease can lead to disability.

Thanks to preventive treatment with recombinant clotting factor concentrates or the latest drugs, people with hemophilia can avoid many serious complications of the disease. Only regular treatment enables patients to lead a normal life.

– In recent years, tremendous progress has been made in the field of treatment of hemophiliacs, but also – which is especially important for our society – significant progress in the field of systematic regulation of treatment of hemophiliacs in Poland. This is a huge advantage of the National Program for the Treatment of Patients with Hemophilia and Related Hemorrhagic Diseases – in our opinion, it is a program that in terms of treatment organization has implemented one of the best hemophilia treatment regimens in Europe – said Bogdan Jagowski, President of the Polish Association of Hemophiliacs.

– I believe that by following this path and using proven and effective solutions, experts will soon begin work on the next version of the program, ensuring our patients the basic safety and continuity of our treatment – he added.

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On World Hemophilia Day, patients are supposed to continue the program in the treatment of hemophilia and related bleeding disorders

What is the treatment of hemophilia and what are the problems of Polish patients?

today Hemophilia treatment works. Although causal therapy cannot be used, patients receive effective symptomatic therapy that relieves symptoms. The missing clotting factor is introduced into the blood by injection. Helps stop bleeding. Patients, apart from receiving injections, require comprehensive care and access to specialists. Unfortunately, many adult patients cannot count on this help.

A survey conducted by the Polish Society of Hemophiliacs in 2021 showed that a third of patients had trouble calling their 24-hour center, and 40 percent of respondents indicated that they had trouble contacting specialized care centers. In the case of hemophilia, constant and regular contact with a medical professional is very important. Meanwhile, the reported average waiting time for an appointment with a hematologist was 1.7 months – which is unacceptable in the case of severe bleeding. Treatment of hemophiliacs in such cases should be carried out immediately – any delay can lead to serious consequences, including a threat to the health and life of the patient.

Experts say work on the national program for the treatment of patients with hemophilia and related haemorrhagic diseases for the period 2024-2029 should begin as soon as possible. Otherwise, patients will find it difficult to access treatment after the end of the current program.

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Expert: Failure to continue treatment can lead to irreversible complications

The situation of people with hemophilia, especially children, has improved in recent years. a. Bawesajuna from the University Medical Center of Warsaw Medical University reminded that since 2008 we have had a preventive treatment program for children with hemophilia in Poland.

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– It was a huge revolution. My patients entering at the age of 18 have virtually no changes associated with hemophilic arthropathy (joint degeneration due to recurrent bleeding – PAP) – the specialist confirmed.

The treatment of adult patients who are deficient in comprehensive care centers to which they will be presented by physicians of various specialties remains a problem. Comprehensive prevention is the only way to prevent complications and reduce the number of costly surgeries.

Thanks to continuous access to optimal clotting and prophylactic factors, hemophiliacs can live like their healthy peers. It’s important to continue into adulthood as well. Professor says. Pawe aguna.

Doctors are counting on positive changes in the new national treatment program for patients with hemophilia and related haemorrhagic diseases for the period 2024-2029.

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Source: PAP

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