Home » Rare diseases, haemophilic joint health campaign makes a stop in Palermo

Rare diseases, haemophilic joint health campaign makes a stop in Palermo

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Rome, April 15 (beraking latest news Health) – 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 screening the joints thanks to portable ultrasound scanners that have arrived in many Italian Haemophilia Centers, including the Hematology Unit of the Palermo “P. Coat”. 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, now in its sixth stage, continues its journey through Italy and lands in Palermo on April 17, to celebrate World Hemophilia Day. The meeting will be online. To participate – a note details – just connect to the zoom platform at 11 to discuss live streaming with Sergio Siragusa, Full Professor of Hematology, Director of the Hematology Unit of the ‘Giaccone’ Polyclinic, Giulia Letizia Mauro, Full Professor of Physical and Rehabilitative Medicine, Director of the Recovery and Functional Rehabilitation UOC of the same polyclinic Dalila Scaturro, physiatrist at the ‘Giaccone’, Gian Luigi Pasta, Medical Director of the Irccs San Matteo Polyclinic Foundation in Pavia, Maria Francesca Mansueto, psychologist and psychotherapist at the Hematology Unit of the ‘Giaccone Polyclinic ‘and Fausto Arcuri, physiotherapist.

During the meeting “Hemophilia and joint pain in the life cycle: the multidisciplinary approach”, promoted by the Association of Amci dell’Emofilia Onlus, the various aspects of pain management will be addressed: from the psychological aspect to adherence to drug therapy, the role of physical activity and physiotherapy. Objective: to sensitize patients and caregivers on the importance of prophylaxis of factors with a prolonged half-life and on the key role of ultrasound, to identify damage to the joints early and avoid severe arthropathies.

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“The Associazione degli Amici dell’Emofilia di Palermo, founded in 1979 to support patients with coagulation problems, has worked over the years to improve their quality of life. On the day of World Hemophilia Day, the association, which has always been committed to helping patients plan pathways and build solid relationships with healthcare professionals, welcomed the ‘Articulate in Tour’ campaign, whose goal is to put specialists and patients in relationship, making them understand their own weaknesses and how to best deal with them “, says Maria Adelaide Celestino, president of the Amici dell’Emofilia Onlus.

“The management of the haemophiliac patient has undergone significant growth in terms of efficacy, safety and sustainability in recent years. The new drugs make it possible to ‘normalize’ coagulation favoring a normal work and relational activity. Today it is necessary to intervene, from childhood, with adequate therapies that avoid joint bleeding in children. In fact, these are the complications that most compromise the quality of life of haemophilic patients. Physical activity and periodic joint screening that allows patient control are the cornerstones of the correct management of those with a tendency to bleeding ”, explains Sergio Siragusa.

“Rehabilitation treatment in haemophilia patients today assumes considerable importance in the prevention and treatment of musculoskeletal complications (synovitis, hemarthrosis and hematomas), as it avoids possible permanent disabilities. The weight-bearing joints (knee and ankle) are the most affected besides the elbow. In fact, thanks to the postural evaluation and the prescription of a rehabilitation project / program, it is possible to prevent the onset of serious complications in subjects with a long life expectancy ”declares Giulia Letizia Mauro.

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The event is open to the public and free to participate. To access the live streaming, simply connect via PC, tablet or smartphone at the following link: https://us02web.zoom.us/j/81690215170#success Registration is not required.

“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 bringing the ‘Articulate’ campaign throughout Italy – he continues – stems 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. On the occasion of World Hemophilia Day, it is important to remember that all this is possible thanks to the correct therapeutic strategies available and to a clear and complete information for the patient, for a life without compromise, protecting the joints and improving general well-being “, concludes.

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