When I was a pediatric resident in Honolulu, Hawaii, I had the great and unusual opportunity to spend time with patients with a condition now largely unknown to most American doctors, except in text books: leprosy, or Hansen’s Disease, as it is more properly termed.
Behind Diamond Head is a small hospital whose history is described as “...a community’s quick response to the serious threat of the bubonic plague... In an effort to halt the spread of the plague, houses were burned, and the fire spread throughout Chinatown, leaving many homeless and in need of medical care. A temporary hospital was established in an old kerosene warehouse in Kakaako. After the plague was confined, the need for tuberculosis treatment became the focus of Leahi. They accepted all patients with incurable diseases, except leprosy.” (Talk about stigma!)
There was a time when the Hawaiians called leprosy “Ma’i pake,” or “the Chinese illness,” because although it was known in all of South and Southeast Asia, it seemed to come to the Islands with Chinese immigration. The terrible stories of families being ripped apart as public health officials identified the sufferers (sometimes small children) and forcibly isolated them with strangers in a camp called Kalaupapa, on the island of Moloka’i, are well known. These leper colonies operated from 1866 to 1969 and had a total of 8500 residents in that time . After 1969, those remaining there were asked to leave, but a handful refused. Kalaupapa was the only home they knew and some were terribly disfigured by their disease. Some of those who agreed to leave were cared for in Leahi Hospital and Clinic, which was where I met them in 1984. They had been in a limbo of ill health since they were turned out from their colony in 1969.
1969, folks! Well within the memory of many of us, sufferers of this condition were kept apart from the rest of the society in impoverished conditions-- in some ways not unlike the old “insane asylums.” By 1969, John Kennedy had been assassinated, the war in Vietnam was at fever pitch and it was the year we sent a man to the moon. We could send a man to the moon but we could not think sensibly about a treatable disease. Sound familiar?
I remember looking at the Leahi tuberculosis ward, then nearly empty, standing in my white jacket in the hot tropical sun and thinking about how the eradication of a once widespread condition could change everything for many people, not just the patients. Once TB was largely controlled, if you were a doctor or a nurse specializing in it, or you owned a TB sanatorium, you needed to find a new job. People could now stop glamorizing this “wasting disease” (18th and 19th century literature about fragile, consumptive women) and stop blaming the sufferers for it.
So back to my opening question: can complex disorders (such as brain disorders) be extinguished the way less complex ones have been? Could anorexia nervosa disappear completely and with it all the clinics (like mine), the therapists, dietitians and doctors who specialize in it? How likely is that? Could schizophrenia disappear (another complex condition)? Autism? Depression? Cancer?
I think we can all agree that the disappearance of any of these complex conditions would be a boon to mankind-- but how is it likely to happen? And why is it important to speculate about it?
I think it’s important because the more we insist on talking about and thinking about anorexia nervosa and other eating disorders as brain disorders, the easier they become to understand in a modern context and the less stigma there is attached. For example, have you ever found yourself annoyed, even angry, at a patient with anorexia who just will not admit that she/he has a problem? Who “lies” about what they ate? Why? you ask yourself. Why are they so blind? Why so stubborn? But think about what it means for a condition to be a brain disorder and it becomes more clear.
As I ponder how this scourge affecting about 1-2% of female humanity and perhaps 0.1% of male humanity might disappear (remember that a small percent of a big number is a big number), I come up with this:
It could prove to be an autoimmune response to an infectious agent which is then eradicated
It could be identified as the confluence of several abnormal gene variants which could then be “turned off”
It could turn out to be the result of a controllable environmental agent in utero, which could then be controlled
It could turn out to be entirely amenable to extinction by an as yet unidentified medication that rewires the brain
Whatever happens, the first step will be the recognition of its neurobiological underpinnings, just as the recognition of leprosy and tuberculosis as caused by identifiable (and treatable) infectious agents was the first step in their control.
Let’s see what tomorrow brings.