{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,9]],"date-time":"2026-09-09T05:41:22Z","timestamp":1788932482307,"version":"build-2803163510"},"reference-count":22,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"1","content-domain":{"domain":["lww.com","ovid.com"],"crossmark-restriction":true},"short-container-title":[],"abstract":"<jats:sec>\n                    <jats:title>BACKGROUND:<\/jats:title>\n                    <jats:p>The low prevalence of rare diseases has caused the need for studies in this field to be neglected. Regardless of the prevalence of rare diseases, many people around the world have to live with the medical, psychological, and social consequences of their condition. Individuals with rare diseases may face challenges that are different from those experienced in more common medical conditions. The life experiences of patients with rare diseases have not been sufficiently investigated. The purpose of this study was to discover the meaning of living as a person with a rare disease.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>MATERIALS AND METHODS:<\/jats:title>\n                    <jats:p>This interpretative phenomenological study was conducted in 2021\u20132022 on 10 patients with one of the rare diseases (registered in the Atlas of Rare Diseases of Iran). Based on purposeful sampling, people with rare diseases living in Mazandaran, Golestan, and Tehran provinces were invited to participate in the study. Data collection was done using open and semi-structured interviews. The research question was exploring understanding the experience and meaning of life as a person with a rare disease. Van Manen's interpretive phenomenological approach was used to analyze the data, and the criteria of validity, transferability, and verifiability were used to ensure the trustworthiness of the research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>RESULTS:<\/jats:title>\n                    <jats:p>The five main themes \u201cpermanent suffering, such as a bird in a cage, rejection, immersion in the whirlpool of thoughts, losing the feeling of life\u201d, and 10 sub-themes \u201cnightmare, giving up, deprivation, limitation, worthlessness, being stigmatized, dark vision, confusion, continuous regret, and inferiority feeling\u201d were extracted.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>CONCLUSION:<\/jats:title>\n                    <jats:p>The results of this study show that the suffering of the disease casts a shadow on all aspects of a patient's life with a rare disease. The effects of illness, disability, limitations, and exclusions had created a human being in a cage, whose right to live like others has been denied.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.4103\/jehp.jehp_1010_22","type":"journal-article","created":{"date-parts":[[2023,8,2]],"date-time":"2023-08-02T06:37:16Z","timestamp":1690958236000},"update-policy":"https:\/\/doi.org\/10.1097\/lww.0000000000001000","source":"Crossref","is-referenced-by-count":12,"title":["Persistent suffering: Living experiences of patients with rare disease: An interpretative phenomenological study"],"prefix":"10.4103","volume":"12","author":[{"given":"Fatemeh","family":"Rezaei","sequence":"first","affiliation":[{"name":"PhD Candidate in Nursing, School of Nursing and Midwifery, Golestan University of Medical Sciences, Gorgan, Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Akram","family":"Sanagoo","sequence":"additional","affiliation":[{"name":"Associate Professor, School of Nursing and Midwifery, Golestan University of Medical Sciences, Gorgan, Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hamid","family":"Peyrovi","sequence":"additional","affiliation":[{"name":"Professor, Nursing Care Research Center, School of Nursing and Midwifery, Iran University of Medical Sciences, Tehran, Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Leila","family":"Jouybari","sequence":"additional","affiliation":[{"name":"Professor, School of Nursing and Midwifery, Golestan University of Medical Sciences, Gorgan, Iran"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"276","published-online":{"date-parts":[[2023,7]]},"reference":[{"key":"R1-20240829","doi-asserted-by":"crossref","first-page":"201","DOI":"10.1007\/s11007-021-09538-9","article-title":"Pathology as a phenomenological tool","volume":"54","author":"Carel","year":"2021","journal-title":"Cont Philos Rev"},{"key":"R2-20240829","doi-asserted-by":"crossref","first-page":"1477","DOI":"10.1007\/s00103-007-0381-9","article-title":"Networking for rare diseases: A necessity for Europe","volume":"50","author":"Aym\u00e9","year":"2007","journal-title":"Bundesgesundheitsbl"},{"key":"R7-20240829","doi-asserted-by":"crossref","first-page":"165","DOI":"10.1038\/s41431-019-0508-0","article-title":"Estimating cumulative point prevalence of rare diseases: Analysis of the Orphanet database","volume":"28","author":"Nguengang Wakap","year":"2020","journal-title":"Eur J Hum Genet"},{"key":"R8-20240829","doi-asserted-by":"crossref","first-page":"139","DOI":"10.1007\/s11133-019-9413-7","article-title":"What is qualitative in qualitative research","volume":"42","author":"Aspers","year":"2019","journal-title":"Qual Sociol"},{"key":"R10-20240829","doi-asserted-by":"crossref","first-page":"90","DOI":"10.1007\/S40037-019-0509-2","article-title":"Varpio L. 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