Taking care of the joint health of patients with haemophilia through new services, training sessions with reference specialists and a site full of clear and useful information in everyday life. In addition, the possibility of undergoing joint screening thanks to portable ultrasound scanners that are arriving in numerous Italian haemophilia centers. These are the ingredients of the success of ‘We articulate‘, a traveling campaign supported by Sobi with the patronage of FedEmo, created to promote the well-being of the joints in people with haemophilia, a rare coagulation disease that has arthropathy among the most frequent complications. Over 5 thousand Italians with hemophilia, of which more than 300 in Veneto.
The tour, now in its ninth stage, arrives in Vicenza with an online meeting scheduled for Saturday 29 May. The appointment is for 9.30, open to all and free. By connecting to the zoom platform (https://us02web.zoom.us/j/82219995016#success), participants will be able to discuss in live streaming with Ilaria Nichele, hematologist of the Hemorrhagic and Thrombotic Diseases Center of Vicenza; Ermes Vedovi, physiatrist at the Verona hospital; Anna Artuso, surgeon specialist in hematology; Stefano Giaretta, orthopedist of the Uoc Orthopedics and Traumatology Oc San Bortolo of Vicenza; Anna Chiara Giuffrida, head of the Hemophilia Center-Uoc Transfusion Medicine Aoui in Verona. Theme of the meeting, promoted by Avec (Venetian Association for haemophilia and coagulopathies), ‘Joint health first of all: from prevention to early diagnosis’.
Experts will address several aspects of hemophilia: the importance of the multidisciplinary approach and prophylaxis, the role of physical activity and proper nutrition, the treatment and prevention of joint damage through early diagnosis. Objective: “To raise awareness among patients on the importance of prophylaxis of long-term half-life factors and on the key role of ultrasound to detect joint damage early and avoid severe arthropathies,” explains a note.
“On Avec, as well as on all associations, the pandemic has weighed heavily – he says Matteo Arzenton, president of the association – The restrictions in the activities in presence, the commitment of all healthcare personnel in the fight against Covid and the management and organizational criticalities have made it very difficult to be able to give live and present support to our members during the months of strict lockdown. We are happy that, thanks to the doctors of our haemophilia center and beyond, and with the support of Sobi, we can start again from a great event on joint health, one of the areas that most impact on the life of a haemophiliac “.
“Hemophilic arthropathy – highlights in fact Nickel – represents the main complication of haemophilia and consists of chronic damage to the joints as a consequence of relapsing hemarthrosis. Regular prophylaxis aims to prevent bleeding and the consequent joint damage and is now increasingly customized on the basis of the patient’s needs and lifestyle, in order to guarantee the most optimal protection and adherence possible “. for Vedovi “arthropathy is the main complication of haemophilia: the prevention and slowing of the progression of joint damage are one of the main objectives of prophylaxis. Periodic assessment of joint status is crucial for the early diagnosis of arthropathy even in patients with moderate haemophilia A. It also makes it possible to monitor the therapeutic adherence of patients on prophylaxis and helps in therapeutic choices “.
This is the message that we articulate addresses to patients and caregivers, remembering the golden rules for proper prevention: “Providing adequate protection with prophylactic therapy, the best strategy to reduce bleeding and keep skeleton and muscles in good condition; taking care of oneself through physical activity, an important goal for preventing joint damage and keeping the musculoskeletal system in good health “.
Yet, according to a national research commissioned by Sobi, with the coronavirus emergency 34% of people with haemophilia have stopped exercising, with peaks of 50% in patients with a severe form of the disease.
The survey also shows that only 57% underwent joint screening in the 9 months prior to the interview. And, as experts worry most, 43% of respondents have never done so before. Instead “periodic joint screening and physical activity – reiterate the promoters of the initiative – are fundamental elements to prevent joint damage and micro-bleeding, not always evident, which over time lead to loss of functionality. Thanks to ultrasound screening of micro-bleeds and constant physical activity, it is now possible to avoid and even prevent joint problems and loss of mobility “.
“Sobi has always considered it important promote a management of the person with haemophilia that takes into account aspects and variables that go beyond the drug alone – declares Sergio Lai, Vp and General Manager of Sobi Italia – Our commitment in bringing the Articoliamo campaign throughout Italy 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. 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 “.