Wegener's Granulomatosis? Has anyone ever heard of it or have it?
It is a rare autoimmune disease that can be hard to detect. Do you know how many doctors in Prince George know about it? After a couple of trips to the emergency ward at our wonderful teaching hospital it has become more and more apparent that it is rare, nurses don't know how to spell it and doctors don't know how to treat it.
That can be scary if you are the one with Wegener's Granulomatosis. It can affect any of your major organs but most often it will affect your kidneys before it is discovered.
My husband spent three-and-a-half months in the hospital, six weeks here in P.G. and two months at St. Paul's Hospital in Vancouver before they discovered it. But now we are home and when I have taken him to the hospital it is very scary to say the least. It has affected his heart, lungs, pancreas and his kidneys, so when he gets sick he could lose the function in any of those organs or all of them.
That would not be good.
If there is anyone out there that has this disease please speak up so that we can get some education about the disease brought forward before another person dies because nobody here knows how to treat it. Thank you for speaking out.