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Adults Living With Amyoplasia: Function, Psychosocial Aspects, and the Benefit of AMC Support Groups
Unni Steen1, Elise Christensen, Ani Samargian
1*TRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital, Nesoddtangen, Norway †Arthrogryposis Multiplex Congenita Support Inc. (AMCSI), Spartanburg, SC.
Abstract:
Little is known about how adults manage living with amyoplasia. Two studies concerning adults with amyoplasia were conducted; a cross-sectional study and a qualitative study. The aims were to describe body functions, activity and participation, and to explore psychosocial dimensions. This article also emphasizes the importance of Patient Support Groups as arenas for sharing experience and gaining knowledge.
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