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European Journal of Investigation in Health, Psychology and Education is published by MDPI from Volume 10 Issue 1 (2020). Previous articles were published by another publisher in Open Access under a CC-BY (or CC-BY-NC-ND) licence, and they are hosted by MDPI on mdpi.com as a courtesy and upon agreement with University Association of Education and Psychology.
Article

The quality of life in the relatives of Wolfram’s syndrome patients

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Federación Española de Enfermedades Raras (España)
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Eur. J. Investig. Health Psychol. Educ. 2015, 5(1), 89-97; https://doi.org/10.3390/ejihpe5010009
Received: 27 April 2014 / Revised: 26 May 2014 / Accepted: 17 June 2014 / Published: 17 June 2014
Wolfram Syndrome (WS) is a rare disease (RD) with an estimated prevalence of 1/770,000 inhabitants. It is considered a multisystemic, chronic and progressive disease.WS diagnosis implies devastating consequences at physical, educational and emotional levels. WS is also known by the acronym DIDMOAD, derived from the first letters of the main clinical symptoms: Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy, and Deafness. Rare diseases are characterized by their low prevalence and the lack of knowledge on the pathophysiology and treatment of them. Interestingly, around 80% of RD have a genetic basis, and this fact causes doubts and uncertainties in the couples, about the idea of having another child. The existence of a RD in a family, alters significantly the relationships and the quality of life within the family. The present work remarks the huge value of psychosocial aspects in order to pay an adequate attention to these patients, not only taking care of the clinical aspects. The main purpose of this study has been to ascertain the quality of life of Wolfram’s syndrome affected patients, and its impact in the daily life.
Keywords: Wolfram’s Syndrome; rare diseases; quality of life; familiar unit Wolfram’s Syndrome; rare diseases; quality of life; familiar unit
MDPI and ACS Style

Esteban, G.; Ruano, M.; Motero, I. The quality of life in the relatives of Wolfram’s syndrome patients. Eur. J. Investig. Health Psychol. Educ. 2015, 5, 89-97. https://doi.org/10.3390/ejihpe5010009

AMA Style

Esteban G, Ruano M, Motero I. The quality of life in the relatives of Wolfram’s syndrome patients. European Journal of Investigation in Health, Psychology and Education. 2015; 5(1):89-97. https://doi.org/10.3390/ejihpe5010009

Chicago/Turabian Style

Esteban, Gema, Mónica Ruano, and Isabel Motero. 2015. "The quality of life in the relatives of Wolfram’s syndrome patients" European Journal of Investigation in Health, Psychology and Education 5, no. 1: 89-97. https://doi.org/10.3390/ejihpe5010009

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