In Italy they are beyond 5 thousand people suffer from haemophiliaand over 10 thousand in general with coagulation defects. In the Veneto region alone, the National Rare Diseases Registry counts approximately 2,500 patients with hereditary coagulation defects. For this reason, today 16 March the projectLet's articulate Do you know what?' stops at the Palazzo della Salute in Padua. Objective of the meeting: to promote joint health and a better quality of life for patients in different age groups. The initiative, sponsored by FedEmothe Federation of haemophilia associations, and created thanks to the support of Sobiis promoted by the associations of the Triveneto: Association of children and young people with haemophilia and other coagulopathies (Abgec), Veneto Association for haemophilia and coagulopathies (Avec) and Free Association of Parents and Haemophiliacs of Veneto (Lagev).
Hemophilia is a rare coagulation disorder which, due to microbleeds in the joints – especially knees, ankles and elbows – can lead to joint problems and significantly affect the general mobility and state of health of patients. Today, according to experts, through a series of prevention and protection strategies – such as prophylaxis with a prolonged half-life factor, periodic joint screening and regular physical exercise and a multidisciplinary approach – it is possible to deal with this pathology and greatly reduce the risk of bleeding, thus preserving joint well-being and consequently a better quality of life.
“As patient associations we have always been involved in education and training courses – he explains Luigi Ambroso, vice president of FedEmo, Lagev and Avec – We welcome with great enthusiasm any action that aims to improve the quality of life of people with haemophilia. 'Let's articulate – You know what?' it represents not only a moment of direct discussion with clinicians, but a real training opportunity in which people with haemophilia become the protagonists of their own health. This initiative allows us to focus on the importance of prevention, to preserve the well-being of the joints in a region like Veneto where around 400 people with haemophilia A and 85 with haemophilia B are treated.”
The “key elements of this approach are ultrasound screening, together with periodic check-ups – adds Ambroso – to monitor the state of the joints, verify the presence of any micro-bleeds which can lead to their degeneration. Even today the physical activity is too often viewed with fear, we must also remember the importance of adhering to prophylaxis and an increasingly appropriate therapy tailored to the patient”.
The data – reports a note – now demonstrate that prophylaxis with prolonged half-life clotting factor, if done regularly and personalized to maintain an adequate level of protection even when carrying out physical activity, reduces bleeding and keeps the skeleton and muscles in good condition . Adherence to therapy, in fact, is essential to preserve joint well-being in all phases of life.
'Articulate' is “now recognized as a point of reference on the topic of joint well-being in responding to an unsatisfied need and bringing 360-degree benefits to the lives of people with haemophilia – he states Carina Fiocchi, medical director Sobi Italy, Greece, Malta and Cyprus – This year it presents itself with a completely new format: the patients themselves lead the debate and discussion with the specialists in a meeting that unfolds through interactive moments with an avatar , question and answer sessions as well as simulations in a digital laboratory. This is because only those who live with haemophilia can fully understand and fully bring out the concrete and daily needs of such a complex pathology. With the therapeutic options that exist today it is possible to live a full life, thanks to correct adherence to therapy and adequate protection. As Sobi we can only be proud to be able to contribute to this evolution.”
The event is part of the 'Articulate' campaign which, in more than 5 years of meetings throughout the country, is a point of reference for the joint health of those with haemophilia, thanks also to a website, www. articlesamo.com, full of clear and useful information for everyday life.
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