📚 Cushing’s: A comprehensive guide to understanding a devastating condition

 

This book is perhaps something a little different than most would expect. Firstly, it’s a single-author book on Cushing’s syndrome. It is not, like most textbooks, a compendium of edited submissions from multiple authors where there are often divergent opinions from one chapter to the next. Instead, it’s a treatise reflecting my education and experience. It is not referenced but instead each chapter is followed by suggested readings. It represents my thoughts, understanding and a personal reflection on a career of evaluating a multitude of patients suspected of having the disorder and treating those confirmed to have hypercortisolism due to one cause or another. It reflects my perspectives of the art and science of the field.

In this book you’ll find my personal opinions about all matters from diagnostic testing to approaches to management. I share patient stories that are particularly informative and indicate how I learned from those patients and built on the foundation of my knowledge to take better care of subsequent patients. I relate scientific information, and results of studies, and comment on the utility and practicality of these results. While you are reading, you might learn a thing or two about statistics. I also relate some of the general essentials of the “art of medicine” that I have learned not only from professors I had encountered in my training and education, but also from my patients and colleagues as well as my nursing and administrative colleagues.

I trained in the era of what I like to think of as the modern-day Renaissance of “evidence-based medicine.” This approach dramatically changed the face of medicine, the doctor-patient relationship, and even the influence of third-party payors and government entities. Unfortunately, however, much of the art of medicine has been seemingly deemed less important that data mining and interpretation. I firmly believe that most physicians can acquire the skills and attitudes required to practice medicine with artful expression while incorporating evidenced-based recommendations. Much of this book illustrates an approach to using data and knowledge with experience to formulate action plans for the benefit of patients. I don’t think of the approaches I share as unconventional, but they may be unfamiliar to those who practice with an emphasis on evidenced-based medicine and who have not seen a lot of patients with the set of disorders leading to Cushing syndrome.

I think of the art and science of our craft as the foundation of what we now call “medical decision-making.” So many different factors need to be considered to make the right choices about diagnosis and treatment of diseases. Medical decision-making implies that one looks at all the evidence and facts about a patient, with an understanding of the applicable scientific evidence of medicine, and then utilize one’s experience to make several decisions, including whether a diagnosis is present or absent, the need for further diagnostic studies, and the best approach to treatment.

This approach should treat patients as individuals, according to need based on a multitude of assessments. I have often said, that if you show me 100 patients with Cushing’s disease, all with the same duration of the condition, identical biochemistry, and tumor sizes, you will show me 100 different illnesses. Everybody is different and I relate some examples in this book. Every patient deserves to be treated as an individual. This is where guidelines fail both physicians and patients. They try to fit square pegs into round holes where all patients are treated equally or according to a formulaic approach rather than according to individual needs. I suggest that physicians use their minds to devise an evaluation and management plan rather than defaulting to and following a guideline. If you’re unable to do so, then you probably should refer the patient to an expert.

On Amazon.

⁉ What Do *You* Think?

This question was originally posted on Facebook.

 

I responded with a quote from this book: Harvey Cushing: A Life in Surgery

“Dr. Harvey Cushing, who is the one responsible for discovering our disease, found some of his patients in circuses.”

Other responses so far:

OP:  Thank you for sharing this Mary Kelly O’Connor… as sad as this is… that our past cushing’s friends were on display as freaks in circuses, i am happy he was able to find them and help them and further his research.

Mary Kelly O’Connor: I remembered from reading this book many years ago.

For a long time, I was “mad” at circuses until I realized that they were the only people offering jobs to Cushies and others who should have had a better chance at life.

I know the circuses were exploiting the “freaks” but at least they could find a place in society.

I am so thankful to Dr. Cushing and the work he did…for all of us. I hate the disease but I am so glad that I’m alive after it was discovered and I didn’t have to run away to join a circus, too.

OP: Mary Kelly O’Connor i also am thankful to dr harvey cushing… even though i did read he was sorta an asshole arrogant jerk. Lol. I guess when you are the father of neuroscience you are entitled though…

Mary Kelly O’Connor:  My first “real” endo, the one who diagnosed me was that description. But he got me into NIH for surgery and I’m thankful to him, too. (But I never went back after I found another endo. LOL)

 

 

📚 A Cushing’s Collection: A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy

 

The author of this book (A Cushing’s Collection: A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy) has submitted a bio and is a member of the Cushing’s Help message boards.

From Amazon:

Diagnosed with a rare disease that only affects between two and ten people per million, Marie Conley used emails to communicate with family, friends, and co-workers to keep them apprised of the diagnosis and prognosis of Cushing’s disease and the many complications she experienced on this journey. Her ironic humor and raw, emotional approach helps bring hope to those touched by this rare and unrelenting disease.

In her mid-thirties, Conley, who strived to keep herself healthy while maintaining the delicate balance of raising a young child, keeping a home, and a demanding career, began to experience a variety of unexplained maladies inconsistent with her life style.Because of the elusive nature of Cushing’s disease, the treatment is a long and complicated process of trial and error.

At this time, there is no cure, largely due to the fact that Cushing’s disease is considered an “orphan disease.” As is her nature, she has decided to “adopt” this “orphan” and is doing everything she can to bring awareness to this disease.Conley’s tenacious spirit and determination would not allow this insidious disease to triumph over her life. Armed with her laptop as the only weapon available in the sterility of the recovery room, the author attacks the keyboard with a vengeance to let friends and family know that in this battle, there is no surrender.

📚 Surviving Cushing’s Disease: A Young Man’s Journey

 

This narrative nonfiction novel chronicles my son’s twenty-year journey to get his Cushing’s disease diagnosed—a journey that took far too long.

Throughout the book, I highlight opportunities for testing that could have been done according to endocrinologist guidelines.

The core message is clear: early diagnosis is crucial for people to live vibrant lives.

Read Surviving Cushing’s Disease: A Young Man’s Journey.

From the back cover: Dean’s health deteriorated slowly because of a tiny intruder in his brain. For years, the little beast caused subtle damage by sending harmful messages throughout his body. Salvation came on a winter morning when surgeons removed the culprit. Surgery corrected the problem, but the real battle is the long, grueling fight against the disease’s lingering effects.

Dean continues to fight for the quality of his life as his smile radiates the scars of his surviving spirit.

Join a Doctor of Pharmacy as he retrospectively reviews his son’s long and challenging journey to obtain a diagnosis of Gushing’s disease. This compelling narrative is framed against the backdrop of clinical guidelines developed by leading endocrinologists from the United States and the United Kingdom.

 

📚 Books: We Are Not Alone: Learning to Live with Chronic Illness

A twilight zone moment – I just started rereading this book again last night and this post from November 10, 2008 appeared on Facebook:

I still have a few extra copies to give away to message board members, if anyone is interested.  If you want to get it on amazon, it’s at https://amzn.to/47tbkL4

📚 Hypopituitarism: An Essential Guide

Hypopituitarism, a partial or complete deficiency of one or more anterior pituitary hormones, is a nebulous topic. No two patients are alike, and the caveats abound. Fortunately, we can treat patients with hormones in this era to maintain some semblance of normality.

Truthfully, we are unable to completely restore function to normal due to the wonderful intricacies of pituitary and target gland functions that simply cannot be matched by a combination of drugs.

In this book, Dr. Lewis Blevins discusses his approach to evaluation and management to optimize treatment and well-being in patients with hypopituitarism.

This book is available on amazon.

👁 Cushing’s Book Review: True story of woman’s abuse is open, honest

Review By Colin Harrington

The Shattered Oak: Overcoming Domestic Abuse and a Misdiagnosis of Mental Illness,” by Sherry Genga and published by Safe Goods Publishing in Sheffield, is based on a true story. It is a story of open and honest reflections of personal experience with domestic abuse, the profound realities of recovery and a startling, and ultimately triumphant, resolution.

The story ends well through the interventions of a therapist, a very sharp nurse and the National Institute of Health (NIH). Or. as the story’s hero describes it, “a little slice of heaven carved out just for me.” This is a story of straight-forward disclosure in the first-person narrative that informs, inspires and provides one person’s path through the wilderness of family dysfunction, abusive hardships in the extreme and extraordinary insights.

Narrator Barbara’s “whole life changed” when she married the charming, intelligent and talented man named Innocent. Barbara could not have predicted how horrendously violent and abusive Innocent would become, in spite of how he provided so well for her and her three daughters and created a lovely, upscale home for them. Barbara is “drawn to putting (her) thoughts down on paper.” Her journal entries are a solace and a method of keeping track of reality. With her husband’s lies and her discovery of shocking secrets of his past life, Barbara recalls her past in order to fathom how she finds herself in a relationship with a man who brutally beats her regularly. The fact is, she remembers a childhood without love, extreme poverty and want, and with these revelations, a deeper understanding of herself. She is also well aware that her husband, too, suffered torment and abuse himself while growing up in an alcoholic family.

In spite of the kindness of a therapist and a courageous divorce in which she attains freedom from abuse for herself and her daughters, Barbara cannot shake a profound depression that leads to three suicide attempts. Deeply religious and spiritual, Barbara prays for enlightenment, or at the very least, a release from mental torment. But when she is committed to a mental hospital, she experiences a jolting loss of personal freedom and brutal treatment. It seems that she has gone from a life of torment to a life of torment in a new kind of hell. But through the attentive and kind professionalism of a nurse named Nancy, who notices markings on her body that seem to indicate Barbara has an undiagnosed medical condition, just recently discussed in medical journals, Barbara is released on medical advice to an NIH hospital in Bethesda, Md. It is at that point that her story mercifully changes for the better in her climb to effective treatments for Cushing’s disease, pituitary cancer and a chance to recover her life.

Barbara’s treatments at that time were part of a ground-breaking clinical study. The effects of high degrees of stress are just now being understood when it comes to trauma and abuse. New insights into Post-Traumatic Stress Syndrome and Cushing’s disease are important medical aspects of domestic abuse situations. This book is a good resource for those in need of help and it tells of how one heroic soul faced down extremes of abuse and trauma with love and determination to recover her life.

In her post script, the author writes, “Some stories are meant to be a secret and some stories are meant to be forgotten. Some stories need to be heard to help the survivor live. There is help for women battling domestic violence, child abuse, suicide and Cushing’s disease.” There are links and resources for that kind of help at the end of the book.

Colin Harrington is the events manager at The Bookstore & Get Lit Wine Bar in Lenox. He welcomes readers’ comments at charrington686@gmail.com.

From https://www.berkshireeagle.com/stories/book-review-true-story-of-womans-abuse-is-open-honest,571606