Hemophilia, today in Bari the itinerant campus ‘Athletes with the A’

A morning dedicated to sport, but also to dialogue, to educate and inform people with haemophilia and their caregivers on the benefits of movement and joint protection functional to achieving a better quality of life, as well as to be a stimulus to the new generations and break down some taboos. ‘Athletes with A’ arrives in Bari, today 21 September at the Cus, the first approach to athletics for children and young adults with haemophilia. The project of Sobi Italia, with the patronage of FedEmo (Federation of haemophilia associations), Coni (Italian National Olympic Committee) and Fidal (Italian Athletics Federation), aims to educate and inform on the benefits of practicing physical activity and sports for people with haemophilia and to approach the topic with greater awareness thanks also to the valuable contribution of clinicians, specialists and instructors who will participate in the initiative.

“Hemophilia is a rare hereditary bleeding disorder – explains Giuseppe Lassandro, medical director of the Pediatric Hemophilia Center of the Policlinico-Giovanni XXIII in Bari – Genetic transmission occurs from mother (carrier) to male child. It is a pathology that has a strong impact on the lives of patients and their caregivers, because the lack of coagulation factors causes bleeding mainly in the joints. In recent years, the treatment scenario has radically changed, because we have innovative pharmacological therapies available that can allow the normalization of hemostasis. It is therefore possible to personalize treatments and guarantee a quality of life similar to peers. Preventive administration (called prophylaxis) of drugs guarantees the absence of bleeding and joint protection. Physical activity, from an early age, must be guaranteed to people with hemophilia because it strengthens muscles, bones and joints as well as performing a fundamental social and educational function. Taking charge of the patient by a multidisciplinary team – with haematologists, paediatric haematologists, orthopaedists, physiatrists, sports doctors and graduates in motor sciences – is essential to increase mutual knowledge and implement that co-responsibility between experts and people with haemophilia that guarantees a successful treatment path”.

The ‘Athletes with A’ initiative – as stated in a note – was born from listening to those who live with hemophilia and from a series of important considerations regarding how much their quality of life has changed (for the better) today. Living with hemophilia in a freer and more serene way also means being able to choose which sport you like to practice most, especially for young people who are often disoriented about their condition with the result of giving up practicing sports. 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 hematologist, 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 potential players and above all which muscles and joints it will involve.

“Until recently, it was thought that hemophilia reduced the possibility of practicing physical activity due to the risk of incurring hemorrhages – underlines Cristina Cassone, president of FedEmo and president of Abce Onlus Martina Franca – At present, for a hemophiliac to practice a sport among those suggested by their doctor is not only possible, but also strongly recommended. Today the time is ripe to allow people with hemophilia to continuously practice sports and improve their psycho-physical well-being through it in complete safety. Now people with hemophilia can in fact rely on prophylactic therapeutic treatments capable of preventing the onset of hemophilic arthropathy. This circumstance 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”.

It is precisely on these premises that the traveling campus is based, aimed at young people with type A haemophilia, but not only, who will be able to discover, in safety, some athletic disciplines guided on the track by a team of expert instructors from Cus Bari. While the youngest will try their hand at sports, adults will have the opportunity to participate in a session dedicated to information on physical activity and haemophilia thanks to the involvement of a multidisciplinary team of clinicians and the local patient association.

“We have always tried to promote a care for the person with haemophilia that takes into account aspects and variables that go beyond therapy alone – says Carina Fiocchi, Medical Director of Sobi Italia – We are proud to work alongside patient associations and listen to the still unmet needs by providing concrete answers with initiatives that aim to improve their quality of life. We are convinced that only through multidisciplinary work is it possible to allow people with haemophilia to open up to a free and full life, protected and safe. Our commitment to the ‘Athletes with A’ campaign intends to promote correct information and aims to educate about movement, starting from the youngest. Furthermore, it allows us to convey an important message, namely that, thanks to correct prophylaxis, the range of sports activities that can be practiced by people with haemophilia has increased significantly”.