Mayo doctor helped spearhead name change for disorder with Nazi namesake

A Mayo Clinic doctor has convinced three medical organizations to rename a rare vascular disorder because its namesake, celebrated German pathologist Dr. Friedrich Wegener, was a Nazi Party member who belonged to a paramilitary organization.

Wegener is credited for his descriptions of a rare inflammation in blood vessels that eventually came to be known as Wegener's granulomatosis. The American College of Rheumatology, the European League Against Rheumatism and the American Society of Nephrology have decided to change the name because of the research of Mayo rheumatologist Eric Matteson.

Matteson was working on an article about Wegener when he stumbled upon the doctor's past.

"Sometimes you learn things when you delve into a person's life that are very problematic," he said. "This for me was one of those instances."

Wegener's membership in the Nazi Party may not have been particularly damning. In 1930s Germany it wasn't unusual for physicians to join the Nazi party to keep their position in a public institution such as a hospital or a university.

But as Matteson and a German colleague dug deeper, they discovered that Wegener's questionable political associations started even before his Nazi membership. In 1932 he joined the Sturmabteilung, also known as the "brown shirts," which terrorized Adolf Hitler's opponents.

"Whether Wegener directly was involved in any types of activities like that we have no idea," Matteson said. "But it's a very problematic membership and before Hitler came to power."

After Germany began attacking and occupying its European neighbors, Matteson said, Wegener was transferred to Poland where he worked as a pathologist in the city of Lodz. His office was located close to the first organized ghetto where Jews and gypsies were confined.

As the city's pathologist, Wegener performed autopsies on people who died in the ghetto. While there's no evidence that Wegener ever participated in human experiments, Matteson said other members of his office did conduct such research. Records show that the health office participated in a Nazi embolism study that involved injecting oxygen into the bloodstreams of some prisoners.

"Many of our patients were very upset about having a disease connected with the Nazi past."

"It is inconceivable that he could not have known what was going on there," Matteson said.

Before Matteson made his discovery, patients with Wegener's granulomatosis had heard only good things about the physician credited with discovering their disease. In 1986 the Mayo Clinic honored Wegener with a symposium. Three years later, the American College of Chest Physicians bestowed upon him the title of "Master Clinician" — an award that has since been rescinded.

The three medical societies representing rheumatologists and kidney specialists have agreed to phase out Wegener's name when referring to the disease. The alternative name they propose is Granulomatosis with polyangiitis (Wegener's). Eventually they say Wegener's name would be dropped entirely, once enough time had passed for physicians to get used to the new name.

That could comfort some who have the disease. Joyce Kullman, executive director of the Vasculitis Foundation, said learning about Wegener's past has been painful for her members.

"Many of our patients were very upset about having a disease connected with the Nazi past. So that was troubling to them," Kullman said.

Kullman's group announced the name change in a recent newsletter to patients. But she said it will be a while before her group is able to adopt the new name fully.

"In a lot of our literature that we already have printed, we're a non-profit, so we can't just go out and print new literature immediately," she said. "It will be a transition."

Wegener is not the first physician with Nazi ties to have his name stripped from a disease. In the 1970s, a group of doctors campaigned to have an arthritic condition called Reiter's Syndrome renamed because German physician Hans Reiter had been convicted of war crimes.