The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance--and the Cutting-Edge Science that Promises Hope (No Series) by Donna Jackson Nakazawa
Authors: Donna Jackson Nakazawa
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says ruefully, allows time for “my new full-time job—seeing specialists.” She gets going each day by around noon and spends what stamina she has left volunteering at the Lupus Foundation of Mid and Northern New York, which has become her “baby,” although it can hardly begin to make up for the fact that “the chance to be a mother has been stolen from me.” The best Kathleen and her husband of fifteen years can hope for is that with the careful monitoring of diet, stress, and sleep, she will have more good days than bad.
To look at Kathleen, however, you would never guess what she has been through or what she faces each morning at the start of her day. Like many people who suffer from autoimmune diseases, Kathleen’s symptoms remain largely invisible. And as was the case with cancer several decades ago, those who have the disease tend not to talk about it.
“People don’t see what lies behind the scenes in most autoimmune diseases,” she says. “Because we go through ups and downs, you might see us on a good day, between severe flares, when we seem to be perfectly fine. You don’t know that we’ve just spent six weeks in hell.” Few can imagine, she adds, that behind her bedroom door even on one of these good days, Kathleen has to take twenty-two medications about an hour before she tries to get up, just so she can handle the pain when her feet hit the floor. “By the time you run into me at the grocery store at two o’clock in the afternoon and say hello to me, I’m ready to nod and say, ‘Oh, I’m fine, how are you?’” Kathleen worries, she says, that because autoimmune disease so often remains hidden from public view, she and other women like her will continue to be stigmatized as malingerers.
A CASE OF BLINDED SCIENCE
How is it that autoimmune diseases have remained so obscure? Why do so many of these diseases go undiagnosed for so long, and why do we have so little comfort and treatment to offer the patients who suffer from them? The answers to these questions require a step back in time, to half a century ago.
The medical age of wonders began seventy years ago, and what an age of miracles it was. When my own grandfather, C. Donald Larsen, a research biochemist and founding member of the National Cancer Institute, served as head of the cancer research grants program at the National Institutes of Health in 1955, he walked into medical laboratory settings every day that, world over, boasted little more than test tubes, microscopes, and Bunsen burners. As a young thirty-eight-year-old scientist in 1939, he had already become world renowned for being the first to demonstrate that cancer-causing chemicals could pass through the placenta and later cause tumors in offspring. Yet his was only one small speck of discovery in the burgeoning age of miracles.
In the span of the next thirty to forty years scientists discovered a range of antibiotics, invented vaccines that would wipe out polio and prevent hundreds of thousands of deaths from rubella and typhus, and America began the war on cancer. Heart surgeons were opening up chest cavities in living patients and transplanting hearts, pacemakers were invented, and neonatal care began to save infants so small it seemed God’s hand had reached down from heaven itself and snatched them from death.
Yet, ironically, during the same time span in which cures for ancient scourges were tumbling out of laboratories, the medical establishment had no idea that autoimmune diseases even existed. Scientists, in general, were clinging to an erroneous presumption that the body’s immune system could not turn on itself; researchers were convinced that an autoimmune response was simply not possible. This presumption—set forth in the early 1900s by Nobel laureate Paul Ehrlich, a charismatic German immunologist who termed this theory horror autotoxicus —stood as dogma across the immunology domain for more than half a century.
It would take a young PhD and
To look at Kathleen, however, you would never guess what she has been through or what she faces each morning at the start of her day. Like many people who suffer from autoimmune diseases, Kathleen’s symptoms remain largely invisible. And as was the case with cancer several decades ago, those who have the disease tend not to talk about it.
“People don’t see what lies behind the scenes in most autoimmune diseases,” she says. “Because we go through ups and downs, you might see us on a good day, between severe flares, when we seem to be perfectly fine. You don’t know that we’ve just spent six weeks in hell.” Few can imagine, she adds, that behind her bedroom door even on one of these good days, Kathleen has to take twenty-two medications about an hour before she tries to get up, just so she can handle the pain when her feet hit the floor. “By the time you run into me at the grocery store at two o’clock in the afternoon and say hello to me, I’m ready to nod and say, ‘Oh, I’m fine, how are you?’” Kathleen worries, she says, that because autoimmune disease so often remains hidden from public view, she and other women like her will continue to be stigmatized as malingerers.
A CASE OF BLINDED SCIENCE
How is it that autoimmune diseases have remained so obscure? Why do so many of these diseases go undiagnosed for so long, and why do we have so little comfort and treatment to offer the patients who suffer from them? The answers to these questions require a step back in time, to half a century ago.
The medical age of wonders began seventy years ago, and what an age of miracles it was. When my own grandfather, C. Donald Larsen, a research biochemist and founding member of the National Cancer Institute, served as head of the cancer research grants program at the National Institutes of Health in 1955, he walked into medical laboratory settings every day that, world over, boasted little more than test tubes, microscopes, and Bunsen burners. As a young thirty-eight-year-old scientist in 1939, he had already become world renowned for being the first to demonstrate that cancer-causing chemicals could pass through the placenta and later cause tumors in offspring. Yet his was only one small speck of discovery in the burgeoning age of miracles.
In the span of the next thirty to forty years scientists discovered a range of antibiotics, invented vaccines that would wipe out polio and prevent hundreds of thousands of deaths from rubella and typhus, and America began the war on cancer. Heart surgeons were opening up chest cavities in living patients and transplanting hearts, pacemakers were invented, and neonatal care began to save infants so small it seemed God’s hand had reached down from heaven itself and snatched them from death.
Yet, ironically, during the same time span in which cures for ancient scourges were tumbling out of laboratories, the medical establishment had no idea that autoimmune diseases even existed. Scientists, in general, were clinging to an erroneous presumption that the body’s immune system could not turn on itself; researchers were convinced that an autoimmune response was simply not possible. This presumption—set forth in the early 1900s by Nobel laureate Paul Ehrlich, a charismatic German immunologist who termed this theory horror autotoxicus —stood as dogma across the immunology domain for more than half a century.
It would take a young PhD and
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