WHAT do you usually do on a normal day? You work or study, play sports, have an aperitif with friends, perhaps to plan a trip or a trip out of town, or arrange a last-minute appointment. In short, all normal things, but not for those living with haemophilia, a serious inherited blood disease. Even for these patients, however, today it is possible to do many “normal” things that were considered unthinkable until recently, as they tell themselves – together with the doctors – in a 4-episode vodcast series, entitled “The extraordinary voice of normality” . The initiative is part of the “Let’s redesign haemophilia” campaign, promoted by Roche Italia with the patronage of the Federation of Haemophilic Associations (FedEmo) and the Paracelso Onlus Foundation, now in its fourth edition.
The voice of the protagonists
In four episodes, the protagonists describe their experiences and the new normal in everyday life, in relationships and sexuality, in the family, in sport and in free time. But above all the feeling of being able to do what was almost impossible for them before, for example making plans and organizing a trip without the fear that an unexpected hemorrhage would blow everything up at the last moment. Each episode is conducted by different influencers depending on the topic dealt with: Raissa and Momo (relationships and sexuality), Federica Di Nardo (trips), Diego Di Franco – The Wonderful World of Dads (family) and i Fius Gamer (sport and free time). The vodcasts will be available on the redisegniamolemofilia.it website and on the campaign’s social channels.
Hemophilia A: how to reduce bleeding safely
by MARIA TERESA BRADASCIO
“A more flexible management of free time and the possibility of experiencing sport are the tangible example of the achievements of normality of patients with haemophilia in recent years, and it is exciting to be able to tell them”, he says. Matteo Di Minno, Associate Professor of Internal Medicine at the Department of Translational Medical Sciences of the Federico II University of Naples, who participated as an expert in the vodcast dedicated to free time: “Of course, precautions are always needed, such as the one for which a comparison is mandatory with your reference center before embarking on a trip, or avoiding extreme sports or contact with a high risk of trauma “.
Hemophilia, therapy must be tailored
Sandro Iannaccone
Disease difficult to treat but increasingly under control
Hemophilia is transmitted from parents to offspring through an X-linked mutation, so sons can be affected while daughters are carriers. Type A haemophilia is the most common, affecting approximately 320,000 people worldwide. Sufferers have low levels, or are totally lacking, of an essential protein known as factor VIII, which is essential for blood clotting. On the other hand, type B haemophilia is caused by a lack of coagulation factor IX and has an incidence of 1 in 30,000 males. “Hemophilia is often diagnosed at a very young age,” he explains Berardino Pollio, Medical Director of the regional reference center for hemorrhagic and thrombotic diseases in pediatric age of the City of Health and Science of Turin – Regina Margherita Hospital: “The moment of diagnosis is always particularly complex for parents as it distorts their family life and expectations. Fortunately today – he concludes – patients and families can organize their days in a more flexible way, without necessarily making them revolve around frequent treatments “.
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