Living with Usher Syndrome: Patient and Physician Perspectives.
Blindness
Hearing impairment
Psychological disease burden
Usher syndrome
Journal
Ophthalmology and therapy
ISSN: 2193-8245
Titre abrégé: Ophthalmol Ther
Pays: England
ID NLM: 101634502
Informations de publication
Date de publication:
Sep 2020
Sep 2020
Historique:
received:
02
04
2020
pubmed:
11
5
2020
medline:
11
5
2020
entrez:
11
5
2020
Statut:
ppublish
Résumé
This commentary article is co-authored by a patient with Usher syndrome type 2A. The patient kindly shares her experience of living a life marked by the severe dual sensory loss associated with Usher syndrome. The experiences of the patient are put into perspective by two ophthalmologists associated with the Ophthalmological Department at Rigshospitalet, Denmark. In this patient–physician perspective a patient with Usher syndrome shares her experience. Usher syndrome affects both hearing and vision. The patient describes how being deprived of these two important sensory functions have formed her life choices, from travelling the world while she still had vision to choosing not to have children due to fear of passing on the disease. Most importantly, the psychological impacts of the disease are shared and put into perspective by her ophthalmologists.
Autres résumés
Type: plain-language-summary
(eng)
In this patient–physician perspective a patient with Usher syndrome shares her experience. Usher syndrome affects both hearing and vision. The patient describes how being deprived of these two important sensory functions have formed her life choices, from travelling the world while she still had vision to choosing not to have children due to fear of passing on the disease. Most importantly, the psychological impacts of the disease are shared and put into perspective by her ophthalmologists.
Identifiants
pubmed: 32388634
doi: 10.1007/s40123-020-00258-6
pii: 10.1007/s40123-020-00258-6
pmc: PMC7406578
doi:
Types de publication
Journal Article
Langues
eng
Pagination
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