Both ended up being “really powerful studies that produced a huge amount of new information” from both a management and clinical standpoint, says Dr. Lockshin.
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Explore This IssueJanuary 2018
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“I think I can say that the way in which we approach pregnancy in 2017 has done a 180-degree turn from before we started,” Dr. Lockshin says. “It used to be said that pregnancy would invariably cause lupus to flare up, and therefore, it was contraindicated in all lupus patients. That turns out not to be true. It doesn’t flare up in pregnancy. There are certain complications that resemble lupus flares, which were being mistaken.”
Another misconception that autoimmune disease posed an absolute universal threat to a fetus also has been debunked, according to Dr. Lockshin
“There are specific blood tests that you can do that can identify which fetuses are at risk and which are not,” he says. “It’s a minority of fetuses that are at risk, but we can pretty much identify those on day one of the pregnancy.
“Now we can predict who is going to get into trouble and who is not.”
A related concern is the health of the baby, which depends primarily on birth weight and gestational age, he says. “If we get the baby to term, that baby is just as healthy as any other baby. There’s no special risk that we identify with autoimmune disease.”
The pursuit for answers to Mrs. Volcker’s questions illuminated issues that transcend rheumatology and led the Center to create a course on chronic illness, says Dr. Lockshin. In talking to medical students, he noticed that they had a much greater grasp on acute illness than chronic illness, how it evolves over time and how it can take years to settle on a diagnosis.
With chronic illness, patients and their doctors often deal with uncertainty. This is a concept that is not talked about much in medicine, notes Dr. Lockshin.
“It’s understanding that chronic illness is not the same as acute illness and that not all things are black and white,” he says.
To address these issues, the Center created a seminar course on chronic illness at Weill Cornell Medical College. In the seminars, students and patients, sitting in the same room, explored these issues together. The seminars, based on Barbara Volcker’s questions, became the source of two lay-language books on process of diagnosis and the management of uncertainty, according to Dr. Lockshin. The books present the same conversation, directed this time to a public audience, in a different format, he says.6,7