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In the Region of Murcia there are 80 patients with hemophilia, of which ten are children
The conference, held in the Day Centre and Lifelong Learning 'The Pond', in Totana, serve children learn techniques for the treatment of their disease
The Minister of Health and Social Policy, Maria Angeles Palacios, and the rector of University Extension and Electronic Administration from the University of Murcia, Mercedes Farias, received today at 55 hemophilic children from all over Spain to participate in the XXIV Conference Training Hemophilia, held in the Day Centre and Lifelong Learning 'The Pond' Totana.
The meeting took place in the aquarium at the University of Murcia (UMU), located in the former artillery barracks of Murcia, where the children had the opportunity to visit the facilities and meet the fish species that are breeding in captivity and as the research develops UMU.
Children from almost all regions and aged between 8 and 12 years, were accompanied on the visit by the President of the Association of Hemophilia Murcia, Dr. Manuel Moreno, and by the 25 monitors that handle for their care and attention during this camp.
The XXIV Hemophilia Training Workshops are developed since last July 15 to Saturday July 27.
The purpose of this annual meeting is that children affected by hemophilia can know their condition and self-treatment technique for greater autonomy and less dependence on the family and hospital.
In these days of summer the children are cared for by a multidisciplinary team, mostly volunteers, who include doctors, psychologists and educators, and involving three nurses, two doctors and a physiotherapist Murcia Health Service.
Some 80 cases of hemophilia in the Region
In the region there are 80 patients with hemophilia, rising to 120 if one considers those with other congenital clotting disorders, of which ten are children.
These data are similar to the rest of Spain, where about 3,000 people have this disease: about 85 percent and the rest Hemophilia A Hemophilia B.
All haemophilia Murcia Health Service (SMS) are in prophylaxis and comprehensive treatment with recombinant factor VIII and IX, which makes it possible to dispense with the use of plasma and ensuring greater safety in treatment.
The treatment applied by professional SMS adheres to all recommendations made since the Royal Victoria Eugenia Hemophilia Foundation (RFVE) to further improve the quality of care.
The Region also collaborates with various studies and works undertaken since the RFVE and from the Spanish Society of Thrombosis and Hemostasis "because the disease requires advance research," Palacios said the minister.
Hemophilia, known as a rare disease, is a hereditary genetic disease that affects sex-linked X chromosome and is manifested by internal or external bleeding.
Thus, hemophilia is transmitted by women who are carriers, and suffered by men.
There are two types of hemophilia A and B, which can be presented by different phenotypes that determine its severity.
It is a recessive and dominant disease because it can cause a generational leap, ie not appearing in one generation and then the next.
Source: CARM
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