[Mucopolysaccharidoses from the view point of mucopolysaccharidoses families--10 years' experiences of the "Austrian Society for Mucopolysaccharidoses"].
The mucopolysaccharidoses (MPS) are rare inborn errors of metabolism. They are caused by defects in enzymes which are necessary for the degradation of mucopolysaccharides. An effective causal treatment is not available as yet. Nevertheless, it is the duty of the doctor, both from the medical and human aspect to assist MPS patients and their families physically and psychologically over many years. This task needs much empathy, working morale and knowledge of these diseases on the part of the medical adviser involved, but also demonstrates the limitations of active medical treatment. Since 10 years the "Austrian Society for Mucopolysaccharidoses" has tried to fill the gap between the MPS families' need for help and the still discouraging current medical treatment prospectives.
Fang-Kircher
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Institut für Medizinische Chemie der Universität Wien.
Kraft
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D000223:Adaptation, Psychological; D000328:Adult; D002648:Child; D017281:Cost of Illness; D005190:Family / Q000523:psychology*; D006801:Humans; D009083:Mucopolysaccharidoses / Q000235:genetics / Q000523:psychology*; D012657:Self-Help Groups; D012803:Sick Role