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A Survivor of Cushing’s Disease
At a recent Endocrinology conference, Louise Pace shared why she is so passionate about Cushing’s Disease, An Often Misdiagnosed and Not So Rare Disorder and why she collaborated with Dr. Edward Laws on the book and how it can help the greater good of humanity.
In the short clip below Louise shares her own personal experience of what she went through and what she has noticed among her fellow peers.
About 24 years ago, Louise Pace was diagnosed with Cushing’s disease. However, at the time, she did not know it. Before being diagnosed, she visited 15 doctors over a span of five years! In addition, she has started a support group where its members go for 5- 20 years before being diagnosed with Cushing’s disease. In this excerpt from her book, she provides some insight with what she went through:
“In my own experience as a Cushing’s patient, I visited a large number of physicians in many different specialties, looking for an answer to my changing physical and mental status (Figs. 1–3). My symptoms were largely viewed individually within the narrow focus of each specialty with no physician putting together the whole picture. One of the several internists diagnosed a vitamin K deficiency when consulted about skin issues; another internist thought I had a parasitic infection picked up from my travels to Nepal; a gynecologist thought I was going through early menopause when consulted about amenorrhea; an infectious disease specialist decided I had contracted a strange infection, no doubt from worms, from a trip to Africa, when consulted about the striae; a gastroenterologist said I ate too much and had food allergies when consulted about my extraordinary weight gain; a hematologist suggested that the bruising I exhibited was probably leukemia; a dermatologist felt that the rashes and striae were from an abusive husband who I was unwilling to accuse; an orthopedist tested me for lupus because I had difficulty walking; and a psychiatrist felt that I was having a hard time accepting the normal aging process when consulted for anxiety, depression, and inability to sleep. This went on for more than 5 years. I ran out of options, and as is obvious now, neither I nor my physicians ever considered an endocrine disorder or an endocrinologist.”
Cushing’s disease—“before, during and after “successful treatment.
Due to her own experience, as well as others, Louise thought there’s got to be a better/faster way of diagnosing the disease. In working together with Elsevier and her fellow co-editor, Edward Laws Jr from Brigham and Women’s Hospital, they were able to put together an essential book to help physicians and biomedical researchers better understand, treat, and diagnose the disease. As a result, Cushing’s Disease, An Often Misdiagnosed and Not So Rare Disorder was released on November, 2016. In her own words:
“Unfortunately, consulting multiple physicians is not rare, but rather the norm among Cushing’s patients. Universally, friends, family, and physicians all think such patients are crazy, lazy, and eating too much. Therefore, the intended audience of this book is all providers, especially physicians, nurse practitioners, physician assistants, nurses, and medical students, whether in primary care or any of the nonendocrinology specialties. Reaching all of these providers to encourage them to think of the Cushing’s diagnosis and to let patients teach them about their disease has been a dream of mine for the past 15 years. Edward Laws, MD, the editor of this text, and all of the contributors, many of whom have served on the Cushing’s Support and Research Foundation (CSRF) medical advisory board, have made this dream come true. “
For a limited time, you can download a free chapter on “Epidemiology and Etiology of Cushing’s Disease” from Cushing’s Disease.
The book is available on ScienceDirect. Need it in print? Purchase on the Elsevier Store and get up to 30% off the list price with free global shipping. Apply discount code STC317 at checkout.
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