“Hemophilia is a rare genetic disease that involves the reduction of a blood clotting factor (factor VIII for hemophilia A and factor IX for hemophilia B). The genes encoding these factors are present on the X chromosome and therefore the disease occurs mainly in males, while females are generally healthy carriers. Those affected by haemophilia have a bleeding tendency, even spontaneous, from early childhood, which varies according to the severity of the coagulation defect. The main symptoms are hemarthrosis, bleeding that occurs inside the joints and which, if not treated promptly and adequately, can lead to chronic arthropathy and disability. The patient may also have potentially life-threatening symptoms, such as brain haemorrhages or abdominal and gastrointestinal bleeding. Hence the need for appropriate and multidisciplinary patient check-ups and therefore for monitoring and continuous assistance “. This was stated by Giancarlo Castaman, SODc Hemorrhagic and Coagulation Diseases, Department of Oncology and Robotic Surgery, Aou Careggi of Florence on the occasion of the online event ‘The importance of telemedicine in haemophilia, the REmoTe project’ by the Rare Diseases Observatory.
“Telemedicine, let’s be clear, is not an alternative – warns Giovanni Di Minno, of the Aou Federico II in Naples – but a complementary tool to face-to-face visits, practicable only according to the patient’s conditions. It is not even a simple video call, but it implements all the activities that are performed during a clinic visit. With REmoTe, in fact, in addition to booking a meeting with the specialist, it is possible to send documents and receive an evaluation, obtain a treatment plan and perform follow-ups “.
#Haemophiliacs #continuous #visits #monitoring
