Portal de Totana
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Since last July 19 until 30, the Center for Continuing Education in Haemophilia, in "The Pond", Totana (Murcia), hosts the XXI Hemophilia Training Seminar for 45 children with asthma aged between 8 and 12 years.
Hemophilia is an inherited disease that affects blood clotting and is characterized by a defect in one of the elements, called factors, which are needed for blood clotting.
So Hemophilia A occurs because it is not fully functional factor VIII and hemophilia B when it is not the factor IX.
As bleeding may occur primarily in muscles and joints to be treated properly in these days of summer, organized by the Spanish Federation of Hemophilia and the Hemophilia Association of Murcia Regional, a multidisciplinary team mostly composed of 3 volunteer medical hematologists , 2 nurses, 2 physiotherapists, 2 psychologists, 11 teachers, staff and administration, serve and live for 12 days with the children to know their disease and are able to perform self-treatment (intravenous administration of clotting factor deficient in children Hemophilia under a protocol with toilet and action steps.)
Also during the 12 days we develop a good support for physiotherapy and rehabilitation to strengthen the joints, reducing pain and joint bleeds.
In addition to the workshops for children, the program has been based around an element of play which give children an unforgettable summer.
The children come from different regions of Spain and most are treated on prophylaxis 2 or 3 times a week with factor concentrates recombinant technology, which should be the treatment of 1 st choice for hemophilia, as recommended by the Commission Cientícia of Real Fundación Victoria Eugenia and the scientific and medical information available today.
Prophylactic treatment with recombinant factors and medical monitoring to children enables them to lead a life as very to similar to that of any other.
Source: Asociación Regional Murciana de Hemofilia
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