The Effects of Erythropoietic Protoporphyria on the Mental Health of Children in the United States

Abstract

The purpose of this study was to determine the mental health impact of Erythropoietic Protoporphyria on children eight to eighteen in the United States. Prior research demonstrates the physical side effects of EPP and the symptoms that result; however, there is a lack of research on how patients are impacted mentally. Data was collected through phenomenological semi-constructed interviews in which participants were prompted to respond to several questions regarding possible factors that may have impacted their mental health. Participants included seven EPP patients, male and female, ages nine through eighteen. Initial results generated five themes (Bullying, Frustration, Social Exclusion, Depressive Language, School Exclusion) which means that EPP patients are affected mentally by their disease. It can be concluded that there is an elevated negative mental health risk on EPP patients; however, this is limited to the small group of participants and cannot represent all EPP patients eight to eighteen in the United States. Future research should expand to more patients across the country in order to work towards improving the mental lives of EPP patients.