La "rara" secuela de una epidemia: el caso del síndrome Post-Polio

Laburpena

Background and Objectives - The Post-Polio syndrome (PPS) is an entity incorporated in 2010 in the International Classification of Diseases and that affects, with variable prevalence, those who suffered of Polio. The recent codification and the unfamiliarity with the disease between professionals, add to the low prevalence the underdiagnoses. The aim of this study is to understand how the polio experience modulates the relationship between people who were affected by PPS and health professionals, the patient´s evaluation of the sanitarian assistance and the empowerment process as an answer to the perceived problems. That is to say that the main goal is to consider memory and history as important conditionings of the current sanitarian circumstances. Method - The core of the research is the result of an online questionnaire, of Iberian scope, composed, through a filter application, by 194 valid answers, 72 of those correspond to Post- Polio Syndrome diagnosed individuals (44 women and 28 men). This inquiry includes open questions, closed questions and Likert scales. The results were statistically treated. Main results - 72,22% of the respondents were born in the 50´s and 79, 17% had suffered the polio infection before the two years of age. The inferior extremities were the most affected which justifies that 81,82% of the women and about 75% of the men had been subjected to an average of six surgical interventions (mostly men), long hospital admissions and explain the need for help to move (special footwear in 80% of the cases). Although all the difficulties they manage to have access to education and to incorporate the job market. The onset of the post-polio syndrome led to a re medicalization of their lives, with difficulty in obtaining a diagnosis in more than 77% of the cases (mainly between women) in consequence of the unfamiliarity of the professionals, and a posterior recognition of the diagnostic process as unsatisfactory. The sanitarian, care and social answer to the needs that result from the deterioration produced by the PPS is also considered inappropriate. The response is an empowerment process through the active search of information and the creation of social movements, since the traditional associations to the virtual social networks. Here, becomes outward a bigger protagonism of women that achieve a greater representativeness in leadership positions. Final Remarks - The appreciation of the acquired achievements by those who are affected by post-Polio syndrome are geographically limited to large urban centers. Their claims include the need for recognition of the syndrome, the need for medical knowledge about the disease and of the application of the assistance protocols. The difficulties of obtaining the retirement and a dignified pension are interpreted as social disinterest. This perception is linked to a feeling of injustice historically grounded. The answer to their problems demands a real empowerment in which they should be considered experience specialists and integrated in experience based activism platforms. Key-