The Niemann-Pick is an autosomal, recessive, rare and with a variable genomic imprinting disease. It involves three phenotypicalities (MNP-A, MNP-B, MNP-C) that differ by age of onset, symptoms and complexity of prognosis with a rather linear maintenance of symptoms. This chapter examines the psychological outcomes implied in the pathway of this disease. More specifically, it considers this pathway as potentially traumatizing and explores the emotional impact of a rare metabolic syndrome both at an individual and family level. Possible psychological consequences result from a complex interplay of negative emotions such as guilt, shame, helplessness, fear, anger in conjunction with patterns of resilience.
Promethean Parenting: the family of Niemann-Pick patients.
ACQUARINI, ELENA
2010
Abstract
The Niemann-Pick is an autosomal, recessive, rare and with a variable genomic imprinting disease. It involves three phenotypicalities (MNP-A, MNP-B, MNP-C) that differ by age of onset, symptoms and complexity of prognosis with a rather linear maintenance of symptoms. This chapter examines the psychological outcomes implied in the pathway of this disease. More specifically, it considers this pathway as potentially traumatizing and explores the emotional impact of a rare metabolic syndrome both at an individual and family level. Possible psychological consequences result from a complex interplay of negative emotions such as guilt, shame, helplessness, fear, anger in conjunction with patterns of resilience.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
