Patient: The True Story of a Rare Illness

An interesting presentation of a rare medical illness, Churg-Strauss Syndrome.The Rare patient survives and he is able to describe his illness, as well as, the difficulty of diagnosis with the uncertain treatment and its lifelong ramifications.The viewpoint of the patient is really the foundation of this text. The patient's description of his symptoms when his illness began and then his body's response to treatment is an education for any medical professional, as well as other patients struggling to be heard by their doctors and family. Unfortunately, the education system for medical professionals is still book heavy. However, trainees are told to listen to patients, the patient will tell you what is wrong with them. In this age of "treat them and street them", the amount of time spent listening and actually hearing the patient is usually about 1 min to 5 min if lucky or if the health care professional really cares about quality and not just quantity. The 15 min visit is for diagnosis and treatment with an allotment to do paperwork/computer entry. In addition, medical training touches on some rare disease, but the emphasis is on routine and common illnesses. The trainee is told "if you hear hoofbeats think horses not zebras". The medical professional who doesn't consider the rare illness, just may miss it. A rare illness can pop up over the length of a professional career. For the patient it is a disabling and debilitating prospect that could well result in permanent problems or death.I have firsthand knowledge of this by diagnosing a rare complication in myself and then alerting my doctor.I read this book with great interest. If a health care professional has never been a patient with a serious problem, they really don't appreciate a patient's frustration or suffering. I would highly recommend this book to other readers. It should be a book included in medical teaching curriculums. My only issue with the text was the "stream of conciouness" episodes, it was unclear if remembered events or dreams or hallucinations. However, these episodes also gave meaning to the patient's difficulties during the initial illness and long recovery.

If you have ever been critically ill , and recovered, or loved someone in that situation, you will relate to this story.

Loved EBGT for years and in celebration of a new album I am reading Ben and Tracey’s books. Aside from interest in them as people, I can say that I was riveted by this book and read it in one day because I just needed to know what happened next.

This book is a medical memoir of sorts - it's Ben Watt's telling us what he experienced at the young age of 29 when he endured a lengthy hospital stay for a rare autoimmune disease.Ben goes on to tell us about his various symptoms prior to his hospitalizations such as asthma and allergies, both of which could be explained away as something normal. As his symptoms worsened and his health deteriorated to the point he could not function, he could no longer ignore what was happening and he went to multiple doctors and finally he was rushed to a hospital.One of the interesting things is what he went through to finally get a diagnosis. I myself have a serious autoimmune disease and I found myself shaking my head in empathy as various illness and ailments are ruled out before they finally came to the right conclusion. These autoimmune problems mimic so many other diseases and are pretty rare, so they often take months if not years to diagnose properly.What Ben Watt does very well is describe the isolation and fear the one experiences during a lengthy hospital stay and the pain and lack of dignity one suffers from continual intrusive and traumatic medical tests and procedures. Particularly tough when one's problem involves their digestive system and their bowels which was true in Mr. Watt's case. He was a young 29 year old who was suddenly thrust into the land of the ill; a place usually inhabited by the elderly and decrepit. His sense of isolation and disorientation was palpable.Recommended. I think it does a real service when people who have gone through something like this can so beautifully articulate their experience.

I had to get this book to read it because I was recently diagnosed with the same rare disorder, although mine has presented with different sets of symptoms. Thank goodness I have not fallen as seriously ill as Ben Watt! He recounts his journey through the mystery of the diagnosis, the horrible ordeal of nearly dying from the necrotic bowel, several surgeries and the long and agonizingly slow recovery. It is a touching tale and at so many points I felt such a kinship and understanding from recognizing in myself similar emotions, fears, stress-- from a frightening and out-of-control kind of experience one can have when you unexpectedly wind up in the hospital, for reasons you first don't understand. Ben writes and tells things like it is; truthful and unvarnished, at times, painfully messy, but eloquent none the less. Things have come a long way, medically speaking, for treatment of this disease, even though the base treatment medication has not changed. I learned a lot of differences in the way healthcare works in the UK vs how we have come to expect things here in the States in 2017.Overall, it was a quick and easy read, in spite of the epic journey for him that it was. He describes his interactions with his family, doctors and nurses and various people and roles as they move through the story in a poignant way; and it makes you realize how much these simple social interactions during times of crisis can affect you. This is a truly human experience that makes you appreciate things about living in a way you never really thought about before. It was a hopeful journey with a happy ending and it provided hope for me too, that I will also overcome the initial hardships of treatment and recovery, with time, patience and care.

This book takes you inside a rare and deeply unpleasant illness. The descriptions are enough to ensure you understand whats going on, theres enough technical detail to assist your understanding and critically, enough of Ben Watts personality for this to be a really human account of serious illness and how it affects the individual and families.A page turner.

This is a painfully honest and extremely well written account of unexpected, unexplained serious illness in a young man and his diagnosis, treatment and recovery. It's very compelling, I read it one sitting. The style is very direct and you feel drawn into the situation. The time spent on hospital wards is very accurately portrayed, especially adjusting to ward life and how your world shrinks, distractions are few, boredom stretches endlessly and one becomes inevitably introspective. This is a very affecting book, it doesn't pull it's punches and is all the more powerful for it. Brilliant. So glad that he has made a good recovery.

Tells the story of a man with Churg Strasse an illness that can affect any part of the body.

Very well written, quite harrowing account of surviving a terrible and very scary illness. Highly recommended read. I have recommended to friends.

It was very easy to read this book in one sitting even though the content is quite disturbing, particularly if you know someone who is suffering from Churg Strauss Syndrome. The author certainly was very lucky to have survived.