Hemophilia, joint wellness campaign stops in Parma

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. These are the ingredients of the success of ‘Articoliamo’, a campaign supported by Sobi with the patronage of FedEmo, created to promote joint well-being in people with haemophilia, a rare coagulation disease that has arthropathy among its most frequent complications. The ‘Articoliamo’ tour, which had already touched Emilia Romagna last March, arriving in Cesena, has reached its eleventh stop in Parma, scheduled for today at 6pm. Also on this occasion – reads a note – ” meeting will take place online and to participate simply connect to the Zoom platform to discuss live streaming with Gianna Franca Rivolta, hematologist – medical director at the SSD Center hub Hemophilia and Mec of the University hospital of Parma, and Antonio Frizziero, doctor Physical and rehabilitative medicine specialist, associate professor at the University of Parma. The event is open to the public and free to participate. To access the live streaming, simply connect via PC, tablet or smartphone to the following link: https://us02web.zoom.us/j/86966335516#. During the meeting entitled “The role of rehabilitation medicine in haemophilia: prevention and cure “, promoted by Aves Odv, Association of Voluntary Haemophilic and Similarmophilic Parma, the different aspects of the disease will be addressed: the importance of the multidisciplinary approach, the role of physical activity and physiotherapy, the treatment and prevention of joint damage. Objective: to sensitize patients on the importance of prophylaxis of factors with a prolonged half-life and on the key role of ultrasound to prevent and identify damage to the joints early and avoid severe arthropathies. “Physiotherapy and regular physical activity are an opportunity for people with haemophilia, even with motor difficulties, at any age. And in the future, the path of care for these patients will be increasingly characterized by how we approach the their functional and physical recovery. Because being physically well means reaping benefits also on a psychological level “, says Luca Montagna, president of Aves Odv. “Hemophilia is a disease that still today has a great impact on the lives of patients and their families. Despite the enormous progress in the therapeutic field, which makes it possible to personalize the therapy more and more, adapting it to the patient’s lifestyle”, says Gianna Franca Rivolta. “Close monitoring is needed to prevent complications of the pathology. For this reason – continues Rivolta – the multidisciplinary team made up of hematologist, nurses, physiatrist, physiotherapists, orthopedists, but also other professional figures such as, for example, dentist and pediatrician, periodic checks aimed at guaranteeing assistance to the person as a whole. Everything is supported by the specialist laboratory. The presence of a counselor and psychologist (figures available thanks to the support of the Patient Association) also allows to face the personal and relational dynamics related to the pathology. The team constantly collaborates for the prevention of joint damage and to offer the patient constant support in all phases of life and pathology, improving their quality of life “, he concludes.” In haemophilic patients – explains Antonio Frizziero – joint involvement and peri-articular represents one of the most fearful complications, in quan In addition to a progressive functional decline associated with pain, it also involves an increasing loss of autonomy from a young age. Recent literature shows that correct integration between the most current therapies and rehabilitative management can slow down the progression of joint pathology by preventing stiffness and significantly improving the patient’s quality of life. The intent of the multidisciplinary team, and in particular that of the physiatrist, is to take charge of the person suffering from haemophilic arthropathy and not only the compromised anatomical structures, building a ‘tailor-made’ rehabilitation project oriented towards individual functional needs “, he concludes. . And it is precisely this message that the ‘Articulate’ campaign wants to bring to the attention of patients and caregivers. With expert advice for correct prevention: guaranteeing adequate protection with prophylaxis therapy is the best strategy to reduce bleeding and keep the skeleton and muscles in good condition; take care of oneself through physical activity, an important goal for preventing joint damage and keeping the musculoskeletal system in good health. From a national research, commissioned by Sobi – reads note – it also emerges that only 57% underwent joint screening in the 9 months prior to the interview Even more worrying, 43% of respondents have never done so to date. Forgetting that periodic joint screening and physical activity are fundamental elements for preventing joint damage and micro-bleeding, not always evident, which over time lead to loss of functionality. Thanks to ultrasound screening of micro-bleeding and constant physical activity – continues the note – today it is possible to avoid and even prevent joint problems and loss of mobility. “Sobi has always considered it important to promote the care of the person with haemophilia that takes into account aspects and variables that go beyond the drug alone”, says Sergio Lai, Vp and General manager of Sobi Italy. “Our commitment in leading the campaign ‘We articulate’ throughout Italy was born from the deep conviction that, only through multidisciplinary work, it is possible to allow people with haemophilia to open up to a free and full life, protected and safe. It is important to remember that all this is possible thanks to the correct therapeutic strategies available and clear and complete patient information, for a life without compromise, protecting the joints and improving general well-being ”, he concludes.