Awakening from a medical mystery: one patient’s experience of being undiagnosed

This personal narrative pleads for a supportive and comprehensive system or sub-system similar to that which exists for cancer patients, to deal with undiagnosed illnesses. By describing the torment of living with a debilitating illness that medicine could not easily recognize, then by contrasting t...

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Autor principal:	Dwane UnRuh
Formato:	article
Lenguaje:	EN
Publicado:	The Beryl Institute 2019
Materias:	patient experience patient-centered care quality of life continuum of care undiagnosed illnesses cerebrospinal fluid leaks oliver sacks system change undiagnosed diseases network Medicine (General) R5-920 Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/407c7aad426f48baabdd82f046c21b4f
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spelling	oai:doaj.org-article:407c7aad426f48baabdd82f046c21b4f2021-11-15T04:28:53ZAwakening from a medical mystery: one patient’s experience of being undiagnosed2372-0247https://doaj.org/article/407c7aad426f48baabdd82f046c21b4f2019-11-01T00:00:00Zhttps://pxjournal.org/journal/vol6/iss3/2https://doaj.org/toc/2372-0247This personal narrative pleads for a supportive and comprehensive system or sub-system similar to that which exists for cancer patients, to deal with undiagnosed illnesses. By describing the torment of living with a debilitating illness that medicine could not easily recognize, then by contrasting this experience with my wife’s experience of the cancer care system, and by referring along the way to lessons learned many years ago from reading the works of the inciteful neurologist, Dr. Oliver Sacks, I hope to inspire the medical system to develop a separate, supportive and comprehensive system to deal with the undiagnosed. As it turns out, my mystery illness was a spontaneous cerebrospinal fluid (CSF) leak. This condition is all too often missed in diagnosis or dismissed, and treatment is often significantly delayed, such as it was in my case for nearly two years. At the same time, my wife experienced the cancer system, allowing us to draw contrasts between the two experiences and leading me to implore the system to draw the two approaches together by identifying some of the missing elements for those with undiagnosed illnesses. To conclude, I make reference to the relatively new Undiagnosed Diseases Network as one possible model to accomplish the above goal across the medical system or within local medical systems. <strong>Experience Framework</strong> This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework. (<a href="http://bit.ly/ExperienceFramework">http://bit.ly/ExperienceFramework</a>) <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Quality%20%26%20Clinical%20Excellence%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-QualityClinicalExcellence">Access other resources</a> related to this lens.</li> </ul>Dwane UnRuhThe Beryl Institutearticlepatient experiencepatient-centered carequality of lifecontinuum of careundiagnosed illnessescerebrospinal fluid leaksoliver sackssystem changeundiagnosed diseases networkMedicine (General)R5-920Public aspects of medicineRA1-1270ENPatient Experience Journal (2019)
institution	DOAJ
collection	DOAJ
language	EN
topic	patient experience patient-centered care quality of life continuum of care undiagnosed illnesses cerebrospinal fluid leaks oliver sacks system change undiagnosed diseases network Medicine (General) R5-920 Public aspects of medicine RA1-1270
spellingShingle	patient experience patient-centered care quality of life continuum of care undiagnosed illnesses cerebrospinal fluid leaks oliver sacks system change undiagnosed diseases network Medicine (General) R5-920 Public aspects of medicine RA1-1270 Dwane UnRuh Awakening from a medical mystery: one patient’s experience of being undiagnosed
description	This personal narrative pleads for a supportive and comprehensive system or sub-system similar to that which exists for cancer patients, to deal with undiagnosed illnesses. By describing the torment of living with a debilitating illness that medicine could not easily recognize, then by contrasting this experience with my wife’s experience of the cancer care system, and by referring along the way to lessons learned many years ago from reading the works of the inciteful neurologist, Dr. Oliver Sacks, I hope to inspire the medical system to develop a separate, supportive and comprehensive system to deal with the undiagnosed. As it turns out, my mystery illness was a spontaneous cerebrospinal fluid (CSF) leak. This condition is all too often missed in diagnosis or dismissed, and treatment is often significantly delayed, such as it was in my case for nearly two years. At the same time, my wife experienced the cancer system, allowing us to draw contrasts between the two experiences and leading me to implore the system to draw the two approaches together by identifying some of the missing elements for those with undiagnosed illnesses. To conclude, I make reference to the relatively new Undiagnosed Diseases Network as one possible model to accomplish the above goal across the medical system or within local medical systems. <strong>Experience Framework</strong> This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework. (<a href="http://bit.ly/ExperienceFramework">http://bit.ly/ExperienceFramework</a>) <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Quality%20%26%20Clinical%20Excellence%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-QualityClinicalExcellence">Access other resources</a> related to this lens.</li> </ul>
format	article
author	Dwane UnRuh
author_facet	Dwane UnRuh
author_sort	Dwane UnRuh
title	Awakening from a medical mystery: one patient’s experience of being undiagnosed
title_short	Awakening from a medical mystery: one patient’s experience of being undiagnosed
title_full	Awakening from a medical mystery: one patient’s experience of being undiagnosed
title_fullStr	Awakening from a medical mystery: one patient’s experience of being undiagnosed
title_full_unstemmed	Awakening from a medical mystery: one patient’s experience of being undiagnosed
title_sort	awakening from a medical mystery: one patient’s experience of being undiagnosed
publisher	The Beryl Institute
publishDate	2019
url	https://doaj.org/article/407c7aad426f48baabdd82f046c21b4f
work_keys_str_mv	AT dwaneunruh awakeningfromamedicalmysteryonepatientsexperienceofbeingundiagnosed
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Awakening from a medical mystery: one patient’s experience of being undiagnosed

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