The name of this blog is based on a nickname for people with the disease used by one Wegener’s Granulomatosis support website: “weggie”. “Weggie” suggests someone living with the disease in any stage rather than a WG patient, someone who never breathes air outside a clinic or hospital.
Those who determine such things as what to call a diseases recently began calling Wegener’s “granulomatosis with polyangiitis (Wegener’s)”, with the added “(Wegener’s)” until everyone gets in line with the new name. “Granulomatosis with polyangiitis” is a bit of a mouthful, yes!? So the generally received way to speak of it is as GPA. Drop the “(Wegener’s)”, or it becomes GPA(W).
I’m a bit confused, so I looked up Wegnener’s granulomatosis to try to better understand why one might rename a disease. Here’s what Wikipedia had to say:
“In 2006, Dr. Alexander Woywodt (Preston, United Kingdom) and Dr. Eric Matteson (Mayo Clinic, USA) investigated Dr. Wegener’s past, and discovered that he was, at least at some point of his career, a follower of the Nazi regime. In addition, their data indicate that Dr. Wegener was wanted by Polish authorities and that his files were forwarded to the United Nations War Crimes Commission. Finally, Dr. Wegener worked in close proximity to the genocide machinery in Lodz. Their data raise serious concerns about Dr. Wegener’s professional conduct. They suggest that the eponym be abandoned and propose “ANCA-associated granulomatous vasculitis.”[16] The authors have since campaigned for other medical eponyms to be abandoned, too.[17] In 2011, the American College of Rheumatology (ACR), the American Society of Nephrology (ASN) and the European League Against Rheumatism (EULAR) resolved to change the name to granulomatosis with polyangiitis….”
Wow. Dr. Wegener was a Nazi? Or one of those doctors a little too close to the death machine of the regime, and liking it? Damned if I want to be a “weggie” now! But I am. Till death.
Call the disease “Giuseppe” or “Jack”, it’s still what it is and it does what it does. Though I don’t care to glorify a Nazi doctor in any way, I won’t redefine myself as “guppaboy” or something equally obscure on the off chance that someone hearing I have the disease (WG) might think I somehow honor Nazis or this doctor by speaking his name out loud each time I say what I have.
Doesn’t “GPA” mean Grade Point Average anyway?
So, rather than confuse everyone by changing the name of this blog, it will continue to be “weggieboy’s blog”.
Dr. Wegener, if not his alleged crimes, is dead and buried. The disease continues to have huge impact on those who have it, medically, financially, and emotionally. People still die from it, though new treatments assure more and more of us live reasonably normal lives. (That is “new normal” lives, as in “within the parameters newly defined by the disease, as it stabilizes”.) Few know the disease as “Wegener’s granulomatosis”; fewer know it as “GPA”. The cause and cure for this disease still are unknown, though, thank God, it is treatable with mostly positive if variable results.
I don’t know. In a way, the disease probably should be named after an infamous Nazi doctor. It, too, isn’t very nice.
You can find out more about vascular diseases at this website:
http://www.vasculitisfoundation.org