Family members' experience of familial amyloidotic polyneuropathy disease - an infernal struggle and a fact of life

Familial amyloidotic polyneuropathy is a fatal, hereditary, systemic, progr essive amyloidosis. No previous qualitative study of the family members' ex perience of the disease has been published. The purpose of this phenomenolo gical study was to understand the lived experience of family members whose nearest and dearest suffered from familial amyloidotic polyneuropathy. In-d epth interviews were conducted with six family members. The analysis of the data was inspired by Colaizzi's method. Two major theme categories, diffic ult to accept and forced to accept, emerged from the interviews. Implicatio ns for nursing practice, such as genetic counselling and support, are discu ssed.