Taking care of joint health and promoting its well-being thanks to new services for patients, training opportunities with the most important haemophilia specialists, and a site full of clear and useful information in everyday life. In addition, the possibility of performing joint screening thanks to portable ultrasound scanners that are arriving in many Italian haemophilia centers. It’s the countryside ‘We articulate‘, supported by Sobi with the patronage of FedEmo, born to promote joint well-being in people with haemophilia and now in its fourth stage, in Cesena. The tour will disembark in the town on March 24, at 5 pm with an online meeting, in order to guarantee everyone’s safety.
During the meeting ‘The multidisciplinary embrace for the well-being of the person with haemophilia. From screening to the importance of physical activity for joint health ‘, promoted by the’ Vincenzo Russo Serdoz ‘Association of haemophiliacs and thalassemics of Ravenna, the different aspects of the disease will be addressed: the role of physical activity, the importance of multidisciplinary approach, treatment and prevention of joint damage. Objective: to sensitize patients on the importance of prophylaxis and physical activity and also on the role of ultrasound to identify damage to the joints early and avoid severe arthropathies.
“We are proud to host ‘Articoliamo’ and to contribute to the improvement of the quality of life of the person with haemophilia. To achieve great results it is essential to have a multi-specialist approach: starting with therapies, which allow the haemophilic person to lead a peaceful and rich life of experiences, up to a path of education and awareness of one’s pathology “, says Maria Serena Russo, president of the ‘Vincenzo Russo Serdoz’ Association.
“A multidisciplinary path allows specialists to guarantee complete protection of people with haemophilia, so that they can live a normal, free life. It is also important to adopt some preventive measures, such as prophylaxis with therapies that guarantee maximum personalization and protection from micro-bleeding, periodic monitoring of the joint state, and constant and appropriate physical exercise. Good habits that, together, contribute to the achievement of a high quality of life “, explains Chiara Biasoli, head of the Congenital Hemorrhagic Disease Center of the Romagna.
The well-being of the person with haemophilia is also measured by going beyond the pathology, as Gianna Bellandi, counselor and family mediator, explains. “It begins with the assessment of the patient’s degree of awareness of the disease. A good adaptation to the disease, from a psychological point of view, involves the recognition and processing of the feelings of anger, sadness or fear that often accompany chronicity – he highlights – These are common reactions that deserve, however, adequate attention so that they remain transient emotions and do not structure themselves as a permanent and lasting affective state. The psychological intervention aims to favor the patient’s adherence to the treatment plan, helping him to restore a meaning to his life. And the patient’s active collaboration in the treatment is fundamental for the effectiveness of the therapy “.
“It is therefore a question – adds Brllandi – of activating empowerment understood as a process of individual growth, self-esteem, self-efficacy and self-determination to bring out latent resources and lead the individual to consciously appropriate his potential”.