(Adnkronos) - A Torino l’incontro ‘OLTRE LAB. Dalla consapevolezza all’empowerment’, organizzato da Sobi con il patrocinio di Acep - Associazione Coagulopatici Emofilici Piemontesi “Massimo Chesta” ODV. “Eventi come quelli di oggi sono fondamentali per dare consapevolezza al paziente e alla famiglia di come un'associazione e i pazienti stessi possano collaborare nell'ottenere una vita libera dalla malattia” afferma Irene Ricca, ematologa presso il Centro Emofilia pediatrico dell’ospedale infantile Regina Margherita di Torino.
Category
🗞
NewsTranscript
00:00Thanks to the therapeutic innovations that have taken place in recent years, the management of hemophilia for us doctors, but also and above all for patients and their families, has completely changed.
00:18Now we no longer have to worry about the main problems of hemophilia, such as bleeding and bruises, because we can take care of this with drugs. Now we have to focus more on the management of the problem of hemophilia in an absolutely normal life.
00:41Our children, in particular, are the future of hemophilia and that future must become something absolutely pleasant, adequate, not limiting, aware. Awareness of one's health problems will certainly lead to an improvement of the patient's overall life.
01:05The general situation is a system, the health system. In the system, we all have a role, so we doctors, we health care workers, have a role in always keeping us up to date and offering our patients the maximum care, but also the role of the patient and the association in being informed here too.
01:25As we often say, we don't improvise to be doctors, but we don't even improvise to be patients. We must learn to be aware of our own problems and the association in this has a fundamental role.
01:40Let us remember that the association is made up of people, it is made up of patients, it is made up of people who are born, grow up and get old, so we always hope that associations are constantly renovated in people and in this pediatric centers have a great role to raise awareness of families and children and adolescents growing up in this role.
02:06Situations such as today, experiences such as Ultralab, are fundamental to give more and more awareness to the patient and to the family of how the association and the patient themselves can collaborate in obtaining what we all want, that is, a life free of disease.