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
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

1-6

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Auteurs

Helene Lønborg-Møller (H)

HLM Consult, Aarhus, Denmark.

Yousif Subhi (Y)

Department of Ophthalmology, Rigshospitalet-Glostrup, Copenhagen, Denmark.

Line Kessel (L)

Department of Ophthalmology, Rigshospitalet-Glostrup, Copenhagen, Denmark. line.kessel.01@regionh.dk.
Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark. line.kessel.01@regionh.dk.

Classifications MeSH