NYT/January 22, 2008
By BARNABY J. FEDER
What’s in a disease’s name? Long-hidden shame, perhaps.
In most cases, as with lung cancer or heart failure, names are not much more than thumbnail descriptions. But for a few common illnesses like Alzheimer’s disease and for hundreds of rarer ones, doctors and patients often use names honoring the first doctor to publicize the illness or its symptoms.
Some doctors have criticized that as a source of confusion. Different names are used in different countries in some cases.
And because some names became widely used before the disease was fully understood, the names may obscure ties to related problems.
Another shortcoming is drawing new attention. The controversy centers on Dr. Friedrich Wegener, a German pathologist who in 1936 identified a rare blood vessel inflammation that since the 1950s has been called Wegener’s granulomatosis. The American College of Chest Physicians awarded Wegener a “master clinician” prize in 1989, a year before he died.
In 2000, Dr. Eric Matteson, a rheumatologist at the Mayo Clinic, and Dr. Alexander Woywodt, a kidney specialist now living in England, set out to write a column celebrating Wegener for The Lancet, the British medical journal. They uncovered a Nazi past that Wegener had kept secret after World War II.
Unlike doctors who joined the Nazi Party to be allowed to practice, Wegener joined the movement in 1932, before Hitler took power. He rose to a relatively high military rank and spent some of the war in a medical office three blocks from the Jewish ghetto in Lodz, Poland. Sketchy records suggest that he might have participated in experiments on concentration camp inmates.
“I can’t directly link him to a specific experiment,” Dr. Matteson said. Records show that other members of the Lodz health office did such research and that Wegener autopsied a prisoner with oxygen injected in his bloodstream in an embolism study.
Wegener’s granulomatosis can be fatal without continuous drug therapy. Because it is often mistaken for more common diseases, patients feel grateful when doctors finally identify it, said Dianne G. Shaw of Chapel Hill, N.C., who received a diagnosis of the disorder in 1995.
But she said she and many others were distressed to learn of the name’s Nazi associations. “The name adds insult to injury,” said Ms. Shaw, who prefers calling her condition vasculitis, the broader term for the family of diseases that includes Wegener’s.
The case recalls that of Dr. Hans Conrad Reiter, a senior Nazi official who left a much clearer trail of war crimes. In the early 1940s, Reiter’s name became linked to a form of arthritis that he had written about decades earlier. His war record was publicized in the 1990s. Although many doctors still refer to Reiter’s syndrome, some journals and textbooks now call it reactive arthritis.
The movement to discredit the Wegener name is beginning to gather momentum. The chest physicians’ group has rescinded its prize. Dr. Matteson and others, including some of the tens of thousands of American patients with Wegener’s granulomatosis, seek a more descriptive term.
At the moment, the most precise candidate is ANCA-associated granulomatous vasculitis, which does not exactly trip off the tongue.