Name Change of Wegner’s Granulomatosis

St. Paul, Minn. — 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.

Rest of the article here.

My rebuttal: It really ticks me off that the American College of Rheumatology has all of a sudden decided that we should have a better name for a rare disease because of Dr. Eric Matteson’s research into the man who discovered the disease. Snort! They didn’t know Wegener’s past before this came to light? Come on. I don’t believe it.

Plus did anyone ask the patients who have the disease what they think of this name change? There are reasons why I think that a name change would be detrimental to my care.

When I go to the hospital or to a doctor, I can say Wegener’s Granulomatosis and the said doctor or nurse will understand the disease. No one knows the disease “Granulomatosis with polyangiitis or GPA.”

Also connecting Wegener’s with Polyangiitis does not accurately describe all of the physical problems that WG patients have. And in my opinion, this name change diminishes the disease.

Does anyone remember that this is a highly dangerous disease that if not treated properly can cause the death of a patient?

Could the money used to come to this decision have been better used for patient care and awareness?

And lastly are we supposed to start calling ourselves “guppies” instead of “weggies?”
I think not.

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About Cyn Bagley

My life is a mixture of travel, jobs, and disease. You can find some of my novels on amazon.com under the name Cyn Bagley.
This entry was posted in Chronic disease, name change, Wegener's Granulomatosis. Bookmark the permalink.

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