Home » Rare diseases: hematologist, ‘gold standard prophylaxis therapy for haemophilia patients’

Rare diseases: hematologist, ‘gold standard prophylaxis therapy for haemophilia patients’

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Rome, April 15 (beraking latest news Salute) – “Prophylaxis is the gold standard of therapy for haemophilic patients. With prophylaxis, in fact, micro bleeding and in particular joint haemorrhages are prevented, thus avoiding the development of haemophilic arthropathy. With the advent of new drugs such as long half-life concentrates and non-replacement therapy, doctors have the possibility to choose from a series of options, to offer personalized prophylaxis therapy, tailored to the needs of each patient “. This was stated by Cristina Santoro, hematologist at the Policlinico Umberto I in Rome, in her speech at the online meeting organized by ‘Articoliamo’, a campaign supported by Sobi with the patronage of FedEmo, created to promote joint well-being in people with haemophilia , a rare coagulation disease which has arthropathy among its most frequent complications.

The initiative has reached its fifth stage and yesterday landed in Lazio, where there are more than 600 people suffering from haemophilia (in Italy there are over 5 thousand), a rare coagulation pathology, which can lead to joint problems and reduction progressive mobility.

During the debate, entitled ‘The multidisciplinary approach and the well-being of the person with haemophilia. From screening to physical exercise, the tools to stay well ‘, promoted by the Lazio Onlus Hemophilic Association, was attended by Santoro and Erminia Baldacci, hematologists at the Mec Center of the Uoc of Hematology of the Policlinico Umberto I, Luana Poggini, orthopedic consultant of the Center Mec Umberto I, Filippo La Cava, orthopedic surgeon of the Santo Spirito hospital in Rome, Rita Tramontozzi, physiatrist Uoc Physical medicine and Rehabilitation of the San Giovanni Addolorata hospital in Rome, Adriana Antonaci, physiatrist consultant of the Ael Lazio Project ‘Rehabilitation to measure of patient ‘, and the physiotherapist Francesca De Rubeis. At the center of the meeting the multiple aspects of the pathology, including the role of physical activity, the importance of the multidisciplinary approach, the treatment and prevention of joint damage.

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“For several years – Santoro recalled – I have been part of a multidisciplinary team that has adopted a common protocol that guarantees the haemophilia patient a targeted and coordinated care, treatment and prevention of joint damage, orthopedic surgery and post-rehabilitation. surgery of haemophilic patients in Rome and Lazio. Objective: to sensitize patients on the importance of prophylaxis of factors with a prolonged half-life and on the key role of ultrasound, to identify damage to the joints early and avoid serious arthropathies “.

“Thanks to this collaboration – continued the hematologist – we have followed numerous patients in rehabilitation centers, in hospitals, but also at home. We have started a surgical and then post-rehabilitation process, despite the fact that the logistical conditions of the Roman institutes are not simple “.

Then there is Covid which “continues to put us to the test – added the expert – In this pandemic year, some activities have inevitably slowed down a bit. Despite the health emergency, however, I must say that we have managed to guaranteeing physiotherapy at home, and this was possible thanks to the support of the Association and some pharmaceutical companies. Here, the SarS-CoV-2 virus forced us to adopt a different way in which to approach the patient “.

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