‘Athletes with the A’ starts today from the Palazzina Appiani in Milan, the first approach to athletics for children aged 12 and over and young adults with haemophilia, promoted by Sobi Italia with the patronage of FedEmo (Federation of haemophilia associations ), of CONI and of Fidal (Italian Athletics Federation). The first traveling campus, which will stop in three Italian cities, aims to educate and inform people with haemophilia and their caregivers on the practice of physical/sports activity and joint protection, addressing the topic in a more aware way. For the occasion, present as godmother and face of the project, the former long distance runner and two-time Olympic silver medalist, Fiona May.
“At Sobi we always try to make a difference, with the aim of listening to the unmet needs of people living with these rare pathologies, the so-called unmet needs, guaranteeing them a better quality of life – says Annalisa Adani, VP and GM of Sobi Italy, Greece, Malta and Cyprus – ‘Athletes with an A’ allows us to convey an important message, namely that today the joints are better protected and that, thanks to correct prophylaxis, the range of sporting activities practicable by people with haemophilia is increased significantly. Even a discipline like athletics, with the necessary precautions, is no longer scary today.”
‘Athletes with an A’ – reports a note – was born from listening to those who live with haemophilia and from a series of important considerations regarding how much the quality of life of people with haemophilia has changed (for the better) today. Living with haemophilia in a more free and serene way also means being able to choose which sport you like to practice the most, especially for young people, who are often confused about their condition with the result that they give up on sporting activities. In order to be able to decide with greater awareness and safety, it is important to follow some precautions, first of all that of evaluating, together with your haematologist, what your abilities and physical condition are. Before choosing a sport, in fact, you should think about what effects it could have on your body, how much contact there will be with other possible players and above all which muscles and joints it will involve.
“Hemophilia is culturally understood as a reduction in all motor activities due to the risk of incurring hemorrhages. Sport, on the other hand, is exaltation and freedom of movement – says Marco Mandarano, FedEmo councilor and president of the Ate Toscana Association – The consequence for the hemophiliac patient is to be excluded from the group and we know how frustrating it can be for a young person. Consider that in the 1980s and 1990s, when the benefits of replacement treatment (prophylaxis) were not well known, it was believed that by dedicating oneself. to sporting activities, haemophilia patients would have questioned their musculoskeletal status”.
Recently, underlines Mandarano, “some scientific publications have demonstrated the opposite. Now patients can rely on prophylactic therapeutic treatments that avoid the onset of haemophilic arthropathy and avoid the fear of the role that sports traumatology can have on the arthropathy itself. Today for a haemophiliac, doing sport is in fact possible, indeed it is strongly recommended. This marks an important paradigm shift in the management of the disease and patient associations must be part of this change by conveying the correct information.”
Precisely thanks to this premise – continues the note – the traveling campus ‘Athletes with the A’ was born, aimed at young people with type A haemophilia, but not only, who want to safely discover some athletics disciplines guided on the track by a team of expert instructors. During the campus there will also be a session dedicated to information on physical activity and haemophilia thanks to the involvement of a multidisciplinary group of clinicians and local patient associations.
Hemophilia – the note recalls – is a mainly male pathology: it is extremely rare for women to be affected by it, despite being carriers of the disease. For this to happen, the father must be suffering from hemophilia and the mother must be a healthy carrier. Many female carriers may have relatively low clotting factor levels and exhibit signs of mild hemophilia.
“Hemophilia is a rare disease of genetic origin linked to blood clotting. There are mainly two forms, hemophilia A and hemophilia B, the first is due to the deficiency of factor VIII, the second to the deficiency of Factor FIX ” explains Chiara Biasoli, head of the Romagna Haemophilia Center at the Romagna Company in Cesena and member of Aice – Italian Association of Haemophilia Centres, recalling the great impact that the disease has on the life of the patient and his family, “because the lack of coagulation causes hemorrhages which can be serious and occur more frequently at the joint and muscle level”.
In recent years, concludes Biasoli, “the management of people with haemophilia is changing. We have innovative therapies available that allow for real personalization of treatments and we rely not only on drugs, but we combine prevention and protection by advising correct physical activity. We have implemented multi-skills trying to optimize multidisciplinarity. It is important to establish a process of collaboration between doctors and patients aimed at increasing mutual knowledge with the aim of making patients, or parents of younger patients, more aware and participatory in their treatment path”.
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