An Alport Syndrome Journey: From Powerless to Empowered - A Patient Perspective.
| Autor: | Bonebrake L; Alport Syndrome Foundation, Scottsdale, AZ, USA. |
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| Jazyk: | angličtina |
| Zdroj: | Glomerular diseases [Glomerular Dis] 2023 Feb 01; Vol. 3 (1), pp. 42-46. Date of Electronic Publication: 2023 Feb 01 (Print Publication: 2023). |
| DOI: | 10.1159/000529433 |
| Abstrakt: | As an Alport syndrome patient, caregiver, and executive director of Alport Syndrome Foundation, I am aware of the frequently challenging road in seeking an accurate diagnosis. Our journeys are scattered with misdiagnosis, missed opportunities for accurate diagnosis, counterproductive medications, and overwhelming guilt when our children are diagnosed. We understand that most of our healthcare providers know very little about our disease. Typically, it is incumbent upon us to become empowered through education and connection with our patient community to be sure that our physical and emotional health is well managed. Competing Interests: I am employed by Alport Syndrome Foundation to serve in the capacity as executive director. (© 2023 The Author(s). Published by S. Karger AG, Basel.) |
| Databáze: | MEDLINE |
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