That systemic lupus erythematosus affects a relatively small percentage of the population does not change the fact that this is a troublesome life-changing disease of uncertain origin and unclear treatment. Thus, we find that physicians and nurses involved with this problem are extremely dedicated to their patients. Together, they try to establish a partnership that will help ameliorate symptoms and maintain normal life patterns.
A book is coming out this fall that should be helpful in that regard. The author is Dr. Donald Thomas, Jr., and the book title will be The Lupus Encyclopedia (Johns Hopkins University Press). This should be a definitive work that will be of great value to patients and caregivers.
The foreword to the book is being written by Dr. George Tsokos, Chief of Rheumatology at Beth Israel Deaconess Medical Center, himself a world expert on the subject. I reprint with permission some excerpts of the current draft of his introduction (which might change somewhat in the final printing), as they are indicative of the passion displayed by those involved in this disease. The biological aspects are stunning, and time will tell what can be done about those, but note especially the final paragraph. There, George decries the current medical care system, which itself contributes to the suffering. That aspect of the disease is within our control and deserves as much attention as the scientific aspects.
Like Dr. Thomas, as a senior in medical school I was assigned to participate in the care of a 24-year old young lady with fevers, chest pain, swollen joints and blood swollen legs. Systemic lupus erythematosus loomed first in the differential diagnosis, and the tests confirmed the presence of anti-nuclear antibodies, anemia, low platelet and lymphocyte counts, which helped seal the diagnosis. Her face is still vivid in my memory, and her anxious and inquisitive eyes ask me every day, "Will you ever find a cure for me? I am engaged to be married and I want to live." We gave her prednisone in buckets like it was done those days, and we probably added to her lupus symptoms a bunch of dreadful problems caused by the drug. Decades later, we can diagnose patients with the disease faster, we can treat them more effectively, minimize drug-related side effects, take better and prompt care of infections and other frequent conditions linked to lupus and promise an almost normal and lengthy life, but we cannot answer positively the proverbial, “Are we there yet?”
How do you solve a problem like lupus? Even if you scan through the pages of the book you hold in your hands you will realize that you are up for a crash course in medicine, not sparing obstetrics, gynecology and neurology. How do you grasp a disease that wants the doctor to command every field in medicine and how naively we expect our fatigued, achy, feverish and disillusioned patient to handle it? Breathing hurts, the joints yell, the skin blemishes and the kidneys silently go in to oblivion. Every organ becomes involved to pour away the well-being and the life of the young ladies.
Lupus is a demanding partner in the life of the patient, and you will soon learn that prompt diagnosis, perfect close care by specialists, tight control of medications and their side effects and abiding, tenacious efforts to control comorbidity (infections, cardiovascular disease and cancer) make all the difference in the world. Doctors are continuously pressed to shorten their encounter with the patients while the documentation component looms continuously larger. This could be fine in the wisdom of the regulators should the doctors be dealing with simple self-limited, one-dimensional diseases. But obviously, the Procrustean (one fits all) approach is damning to patients with lupus and their doctors. The doctors have little time to go over the many dimensions of the disease that each patient brings to each office visit and no time to educate them properly.
Dr. Thomas and all of us who care deeply about the patients know very well that it is the patients who take charge of their disease who fare the best. They come to the office quite prepared, and it is our duty to educate them further. They bring knowledge acquired from the internet (usually unfiltered and non-critical) and the doctor is pressed to transfer scientific knowledge to properly fill the gap. It is incumbent upon the healers to translate the medical information to the patients so that they can maximize the earned benefit. In these encounters lots is lost in the translation that compromises the welfare of the patient.
A book is coming out this fall that should be helpful in that regard. The author is Dr. Donald Thomas, Jr., and the book title will be The Lupus Encyclopedia (Johns Hopkins University Press). This should be a definitive work that will be of great value to patients and caregivers.
The foreword to the book is being written by Dr. George Tsokos, Chief of Rheumatology at Beth Israel Deaconess Medical Center, himself a world expert on the subject. I reprint with permission some excerpts of the current draft of his introduction (which might change somewhat in the final printing), as they are indicative of the passion displayed by those involved in this disease. The biological aspects are stunning, and time will tell what can be done about those, but note especially the final paragraph. There, George decries the current medical care system, which itself contributes to the suffering. That aspect of the disease is within our control and deserves as much attention as the scientific aspects.
Like Dr. Thomas, as a senior in medical school I was assigned to participate in the care of a 24-year old young lady with fevers, chest pain, swollen joints and blood swollen legs. Systemic lupus erythematosus loomed first in the differential diagnosis, and the tests confirmed the presence of anti-nuclear antibodies, anemia, low platelet and lymphocyte counts, which helped seal the diagnosis. Her face is still vivid in my memory, and her anxious and inquisitive eyes ask me every day, "Will you ever find a cure for me? I am engaged to be married and I want to live." We gave her prednisone in buckets like it was done those days, and we probably added to her lupus symptoms a bunch of dreadful problems caused by the drug. Decades later, we can diagnose patients with the disease faster, we can treat them more effectively, minimize drug-related side effects, take better and prompt care of infections and other frequent conditions linked to lupus and promise an almost normal and lengthy life, but we cannot answer positively the proverbial, “Are we there yet?”
How do you solve a problem like lupus? Even if you scan through the pages of the book you hold in your hands you will realize that you are up for a crash course in medicine, not sparing obstetrics, gynecology and neurology. How do you grasp a disease that wants the doctor to command every field in medicine and how naively we expect our fatigued, achy, feverish and disillusioned patient to handle it? Breathing hurts, the joints yell, the skin blemishes and the kidneys silently go in to oblivion. Every organ becomes involved to pour away the well-being and the life of the young ladies.
Lupus is a demanding partner in the life of the patient, and you will soon learn that prompt diagnosis, perfect close care by specialists, tight control of medications and their side effects and abiding, tenacious efforts to control comorbidity (infections, cardiovascular disease and cancer) make all the difference in the world. Doctors are continuously pressed to shorten their encounter with the patients while the documentation component looms continuously larger. This could be fine in the wisdom of the regulators should the doctors be dealing with simple self-limited, one-dimensional diseases. But obviously, the Procrustean (one fits all) approach is damning to patients with lupus and their doctors. The doctors have little time to go over the many dimensions of the disease that each patient brings to each office visit and no time to educate them properly.
Dr. Thomas and all of us who care deeply about the patients know very well that it is the patients who take charge of their disease who fare the best. They come to the office quite prepared, and it is our duty to educate them further. They bring knowledge acquired from the internet (usually unfiltered and non-critical) and the doctor is pressed to transfer scientific knowledge to properly fill the gap. It is incumbent upon the healers to translate the medical information to the patients so that they can maximize the earned benefit. In these encounters lots is lost in the translation that compromises the welfare of the patient.
4 comments:
One of my earliest memories of being a 3rd year medical student was a 16 year old girl with lupus who died of renal failure. We have come a long way 37 years later, but this is still a dread disease.
nonlocal
Can't wait to see how we treat lupus and other complex medical conditions when big medicine steps in and we're working on the Cheesecake Factory assembly line!
http://www.newyorker.com/reporting/2012/08/13/120813fa_fact_gawande
My white, Irish Dad (not the typical patient profile) died of Lupus at age 40 in 1967. He had both the systemic and discoid type and suffered tremendous daily pain for 25 years. During my childhood, he spent months at a time in a chronic disease hospital and was a willing "guinea pig" for steroid and methotrexate treatments. He had a lot of respect for his health care workers, especially the nurses, which is probably why I became one.
I appreciate the line 'manage themelves' that after 25 years of blood tests, scans, biopsies, medications, including 'buckets of cortisone' and chemotherapy my daughter now 43 years old has chosen to manage the symptoms as best she can.
"If I find another Dr who reads my path results and says these results are off the radar' I will scream.
Websites (for what they are worth) focus on diagnosis and more 'tests'. There is minimal information on how to manage life when you can be up and about for 4-6 days a month. The rest of the time is spent managing the overwhelming fatigue, nausea, constipation and cluster headaches.
I am a registered Nurse and her carer. Lupus support groups were useful in the past, but today we live a day-at-a-time.
Community education nearly zero. Support the same - It is not for the lack of trying.
Lorraine PhD
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