Go Back  DVD Talk Forum > General Discussions > Other Talk
Reload this Page >

Anyone here have/know someone with Wegener's Disease?

Other Talk "Otterville" plus Religion/Politics

Anyone here have/know someone with Wegener's Disease?

Old 01-01-17, 07:41 PM
  #1  
DVD Talk Platinum Edition
Thread Starter
 
Living Dead's Avatar
 
Join Date: Mar 2004
Location: The Graveyard
Posts: 3,209
Anyone here have/know someone with Wegener's Disease?

My dad has been sick for about five weeks, and doctors were baffled at the cause. He's been in the hospital nearly half that time. He was diagnosed yesterday with a rare disorder that attacks the respiratory system called Wegener's Disease, aka GPA (Granulomatosis with Polyangiitis).

The simplest explanation is this: his body's immune system decided his organs were invaders and began attacking them the way they would normally attack some kind of sickness. Anyone with this disease must be placed on immuno-suppressive drugs for the rest of their lives or their body will destroy its own organs. There is no cure, only management. The disease is sent into remission much like cancer, but can reappear at any time.

I had never heard of this illness or anything like it. He is apparently one of about a hundred people in the entire state who has it. Info and stories from people who are afflicted is somewhat scarce. I've watched a few youtube videos, but most are from younger folks and don't really say anything useful.

The doctors can tell us next to nothing. They don't know what causes the disease nor can they can't tell us what long term effects might be since the disease is radically different for each person. If anyone has any personal stories, I'd love to hear them.
Living Dead is offline  
Old 01-01-17, 11:48 PM
  #2  
DVD Talk Legend
 
Abob Teff's Avatar
 
Join Date: Aug 1999
Location: Not necessarily Formerly known as Solid Snake
Posts: 20,050
Re: Anyone here have/know someone with Wegener's Disease?

It came up on multiple episodes of House ... It's not lupus.

Personal experiences may help you cope, but the doctors aren't hiding things from you. Any auto-immune condition is a bitch. Basically, your own body goes psychotic on itself. The cause and remedies are pure guessing games. Type 1 diabetes is a more common auto-immune disorder, but they still don't know what causes it. There is speculation, but it is just that.

The good news is that Wegener's is treatable.
Abob Teff is offline  
Old 01-03-17, 08:31 PM
  #3  
DVD Talk Platinum Edition
Thread Starter
 
Living Dead's Avatar
 
Join Date: Mar 2004
Location: The Graveyard
Posts: 3,209
Re: Anyone here have/know someone with Wegener's Disease?

I wasn't suggesting the doctors were hiding things from me. I'm simply looking for the perspectives of others who may have experienced the same disorder. There's not much useful information available.
Living Dead is offline  
Old 01-12-17, 11:28 PM
  #4  
DVD Talk Ultimate Edition
 
Join Date: Jul 2000
Location: houston, tx
Posts: 4,843
Re: Anyone here have/know someone with Wegener's Disease?

im a pulmonolgist so i have seen 3 cases (iave been doing this for almost 9 years). 2 did not end well. he needs a damn good pulmonologist and rheumatologist to co-manage the disease together... essentially, he needs very strong medications to suppress his immune system to prevent flares which can be life threatening. and, for the love of all that is holy, when he is on immune suppression, make sure he takes bactrim for PCP prophylaxis.... good luck
krkuhl is offline  
Old 01-20-17, 01:46 AM
  #5  
DVD Talk Platinum Edition
Thread Starter
 
Living Dead's Avatar
 
Join Date: Mar 2004
Location: The Graveyard
Posts: 3,209
Re: Anyone here have/know someone with Wegener's Disease?

Thank you for the information. He's in the process of seeing multiple doctors right now. It's all very intimidating.
Living Dead is offline  

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is On
Trackbacks are Off
Pingbacks are Off
Refbacks are Off


Thread Tools
Search this Thread

Archive Advertising Cookie Policy Privacy Statement Terms of Service

Copyright 2018 MH Sub I, LLC dba Internet Brands. All rights reserved. Use of this site indicates your consent to the Terms of Use.