“Today people with haemophilia have the possibility of accessing a truly wide range of medicines”. This was said by Patrizia Di Gregorio, hematologist and director of the Transfusion Medicine Service of the Vasto-Chieti ASL, on the sidelines of the third appointment of Sobi’s ‘Let’s Talk’ project, launched last October to delve into current topics and unexplored perspectives in the context of rare diseases. At the center of the third talk, entitled ‘Health equity, experiences and objectives for a better Quality of Life of people with rare diseases’, the theme of inclusion and the possibility, for people with rare haematological diseases, of having a high quality of life.
“Having hemophilia in the past was a very serious problem, let’s think about the 1950s and today: not much time has passed but now we have many more tools – adds Di Gregorio – One of the objectives we set ourselves is to make these people who are ‘haemophilia free mind’, that is, with a mind free from the idea of their illness, and we have already partly made them so, thanks to the new therapies that are being developed. And not only by virtue of these, but also and above all thanks to them to the ability of all those around people with haemophilia and their caregivers to form a network capable of facilitating the improvement of their quality of life”.
“We are not just talking about doctors, but also about physiotherapists, psychotherapists – underlines the haematologist – Because I deeply believe that good psychotherapy can benefit everyone. There are those who maintain that there will be the possibility of definitively curing haemophilia, although personally I see this goal as still far away. However, today we have a therapeutic armamentarium capable of promoting inclusiveness, especially for the younger generations, and ensuring that they can carry out the activities of their peers and have an active social life. Those patients with haemophilia who do not belong to the youngest age group have unfortunately already had problems, such as joint damage. What we can do is make them feel as best they can, because social inclusion is for everyone and must be for everyone,” she concludes.
#Rare #diseases #hematologist #Gregorio #Wide #range #drugs #haemophilia #patients
