Rural Wisconsin doctor in largely Amish and Mennonite town sees some of the world's rarest genetic diseases

Dr. James DeLine outside a home in La Farge, Wiusconsin.
(Milwaukee Journal Sentinel photo by Mark Hoffman)

James DeLine grew up in a rural farming community in Illinois, and gravitated toward rural practice after graduating from medical school. But when he accepted a job as the sole physician in La Farge, Wisconsin, in 1983, he never could have dreamed that his practice would lead him to the cutting edge of genetic disease study, Mark Johnson reports for the Milwaukee Journal Sentinel.

La Farge, pop. 750, is a hotbed of rare genetic diseases because of its large Amish and Old Order Mennonite population. Sometimes known collectively as the Plain People, the Amish and Mennonites generally marry within their communities, which increases the chances that rare genetic diseases will be expressed, Johnson reports. La Farge has the second-largest cluster in the world of sitosterolemia, a very rare disease that causes blood-vessel linings to thicken, and a much higher than average incidence of other rare genetic diseases. As a result, DeLine has worked with geneticists from as far away as England to help diagnose and learn more about such diseases to help his patients.

Four years ago, the La Farge Medical Clinic opened its Center for Special Children, "which focuses on the diagnosis and treatment of children born with rare genetic and metabolic diseases. Many, but not all, of the center’s children come from Amish or Mennonite families," Johnson reports.

La Farge in Vernon County, Wisconsin
(Wikipedia map)

DeLine didn't find out about the high incidence of genetic diseases for some time. Plain People are often wary of outsiders and rarely seek medical help. It took DeLine and his staff years to gain their trust. "Often, they fear that going to a hospital or clinic will mean surrendering the decision-making to doctors who neither respect their beliefs nor understand their financial limitations," Johnson reports. "DeLine, not a religious man himself, accommodates the beliefs of patients and parents; he has always viewed them as the ultimate decision-makers. As a result, the clinic has become a magnet for Plain People. Some travel eight hours from Missouri or Iowa just to see him."

DeLine was on his own for years, but in 2003 his clinic was purchased by Vernon Memorial Healthcare in the nearby town of Viroqua, so now the clinic has two more doctors and a staff of 25, Johnson reports. DeLine says he hopes to practice for another five years or so before retiring.

It will surely be difficult to fill DeLine's shoes, according to Byron Crouse, retired associate dean for rural and community health at the University of Wisconsin-Madison. "He’s maintained the Norman Rockwell bedside manner skills, and yet he’s working on the cutting edge of 21st-century medicine, the very newest science,"Crouse told Johnson. "I can’t think of anybody else who has that ability."