Tag Archives: GPA

Post 542: Phil Berggren of Swift Current, Saskatchewan

Sorry to say, one of my weggie friends, Phil Berggren, just died after many years battling Wegener’s granulomatosis/GPA. I’ve known him for five years, and made his acquaintance through Australian Andrew MacLean’s excellent support website, Wegener’s Granulomatosis Disease Support Forum, on which he was very active.

phil berggren

Phil was a survivor, with a strong will to live, a strong interest in knowing everything he could about this disease that just took his life. His body, in the end, was weakened by the disease, and even his strong will was unable to heal his lungs, his body.

He willingly shared his knowledge, often from hard-earned experience, with other weggies and members of their families, something that comes up in many of the comments posted on Facebook, where I learned he’d just died.

Knowledge is power when it comes to quieting the fears of a weggie. Or of helping a weggie to accept sometimes grim news about his or her prospects. I hope his knowledge helped him as much as his faith did when the end approached. He was a good person.

Phil, God bless, my prayers are for you, your family, your friend Alysia, and everyone who mourns your passing. We will miss you. You made a big impact in a too-short life, and inspired many people who needed a boost to the spirit when their doctors presented them more bad news about this disease we share with you.

I’ll return to posting things about my kitties tomorrow, but today is a day to honor the memory of Phil Berggren. His phone number’s on my cellphone, you know. Today, I wish I could call him in Heaven to say “Thanks! You inspired me, you answered questions I had, and you made a difference in my life in ways I never told you.”

http://vasculitisfoundation.org/

GPA?

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/