Hedwig Weiß and Florian PrinzOccupational Therapy in Epidermolysis Bullosa1A Holistic Concept for Intervention from Infancy to Adult10.1007/978-3-7091-1139-0_10© Springer Wien New York 2013
10. Conclusion
Hedwig Weiß1 and Florian Prinz1
(1)
University Clinic for Physical Medicine and Rehabilitation, State Hospital Salzburg, Salzburg, Austria
Abstract
The idea of this book arose out of necessity. So far, there has been no publication of OT intervention with children and youths with EB, probably because this condition is a so-called rare disease, and only a relatively small number of therapists are involved in such treatment. In therapeutic practice this meant starting with the OT treatment of EB clients on the principle of ‘trial and error’ or ‘try and discard’. Only gradually have meaningful, goal-orientated measures with relevance to everyday life crystallised; the special needs of those affected by EB and the resulting requirements of treatment have become more distinct and clear.
The idea of this book arose out of necessity. So far, there has been no publication of OT intervention with children and youths with EB, probably because this condition is a so-called rare disease, and only a relatively small number of therapists are involved in such treatment. In therapeutic practice this meant starting with the OT treatment of EB clients on the principle of ‘trial and error’ or ‘try and discard’. Only gradually have meaningful, goal-orientated measures with relevance to everyday life crystallised; the special needs of those affected by EB and the resulting requirements of treatment have become more distinct and clear.
A combination of paediatric OT principles and hand rehabilitation seems to offer the necessary background. Practical experience has shown that this rather unusual combination is expedient and to the point in the treatment of EB because of the very special and complex pathology. It became clear that by using a holistic approach including the entire situation of the affected person and involving OT specialists from both hand therapy and paediatrics, a much larger contribution could be made to enable EB clients their own self-determination and participation in everyday life.