Winter school for hemophilia
Education is so important that every association of patients and physicians has realized that a coherent and common plan will achieve success. Thus, the Romanian Hemophilia Association in collaboration with the “Cristian Şerban” Foundation starting in the summer of 1992, in Cheveres, Timiş county, offered the first camps dedicated to hemophilia patients in which, information on disease, treatment and recovery, occupied central area of of these meetings. Subsequently, with the opening of the “Cristian Şerban” Medical Center in Buziaş, these aspects were professionalized and the assistance of patients with hemophilia increased significantly with the existence of a diagnosis and treatment program dedicated to hemophilia. It is natural and important as subjects. News and perspectives in the treatment of haemophilia; the physio-kinetotherapeutic assistance of the patient with haemophilia; invasive orthopedic interventions in the treatment of patients with haemophilia; assistance of psychological, family and social support; the particularities of physio-kinetotherapy in hemophilia; patient compliance and adherence; hemophilia inhibitors; Present therapeutic realities and opportunities for perspective, have been and will remain important topics to be discussed within our community .
THE MAIN LEARNINGS OF THE SCHOOL FOR HEMOPHILIA
about us, without us!
The wonder of improving our chance of therapy was possible … only with the full involvement of patients and doctors! The cost-effectiveness and efficiency of the therapy have been proven; its application must be watched! Ignoring and not using the opportunities offered is not only shameful, inadmissible, but also guilty.
Preventing it is cheaper than treating it. Not to treat is more expensive than to treat!
substitution introduced early in childhood is the key to success, but it is
profitable even in the conditions of its later initiation! Even a single joint
bleeding can be too much !!!
In case of doubt, substitute yourself. Treat yourself immediately! At home! Do not delay more than 1 maximum 2 hours from the onset of bleeding..
below 1% factor level VIII!
It’s not just me … there are many others like me, with equal rights to treatment.
Only a consumption of a minimum of 4UI Factor VIII / head / year and 0.5UI Factor IX / head / year in the country gives us the chance of equal, non-discriminatory access to satisfactory treatment.
is indispensable in our lives. “Use it. Or loose it (muscles and joints) “
We agree with our National Registry, provided we have restricted access to our data.