wegeners granulomatosis: my father died... - Vasculitis UK

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wegeners granulomatosis

jephcote2202 profile image
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my father died october 11 1981 and was only 33. he kept going the doctors and the doctors said that it was only flu, then finaly 3 weeks later he was admited and sadley died. i want to know is there a cure ?

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jephcote2202
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LynneJ profile image
LynneJVasculitis UKVolunteer

Hi there

I am not an expert, only a sufferer, but I would say that I think cure is the wrong word as it is not like measles or flu eg. Put simply it is the body's own immune system, instead of fighting germs etc, it gets carried away and turns on itself so it is a matter of calming the immune system down without making it go too low.

I was told when I was diagnosed that it is relatively rare and dangerous and there was not a thing I could have done to avoid it. I understand that once you have had it, you can go in remission with drugs first and then hopefully without drugs. I do not know if you can be in remission indefinitely though, I certainly hope so!!!!

I think each case is different in how it presents itself and the medication one needs. Which is another reason why it is hard to diagnose. It is not thought to be hereditary either.

In the 80's there was a lot less known about it and diagnosis was a lot harder. We are lucky now, in so much as, a lot more doctors know about it and at Vasculitis UK we work hard at informing them so that hopefully people will get diagnosed quickly unlike your father so long ago. There are specialist consultants now as well and lots of research going on.

Have you read the VasculitisUK website at vasculitis.org.uk/ There is plenty of information about WG and other forms which you might find interesting.

I hope this has been of some help.

Lynne

PatriciaAnn profile image
PatriciaAnn

Hi

Sorry to hear about your father.

As Lynne says, things have moved on considerably since the early 1980's - thank goodness. However, there still isn't a cure for Wegener's (or for most of the vasculitic diseases). Early diagnosis and correct treatment means that fatality rates have been reduced considerably. For most of us we gain remission by taking a combination of chemotherapy and steroid drugs and then, hopefully, are maintained by taking less toxic drugs. Some lucky individuals can get into remission and do not need drugs to keep them there. However, there is always a chance that we might relapse - whether taking maintenance drugs or not.

Best wishes. PatriciaAnn (Wegener's since 2003)

John_Mills profile image
John_MillsVolunteer

I am so sorry to hear about your father... my husband John was diagnosed April 2001 ..He was so very ill but was also so very lucky the consultant had seen and diagnosed WG before...no there is not a cure, but the Vasculitis medical profession are working on it... and also for kinder and better treatment to treat WG... this last few years there has been a big step forward into recognising and diagnosing WG as Pat and Lynne have already said.... research and treatment have moved on in leaps and bounds.. since the late 90's ...Vasculitis cannot be cured but it can be contolled with modern medication..and it is getting better....40 years ago WG was a sentence of early death but now there is no reason, if the disease is recognised and diagnosed early and treated promptly and appropriatly that people with WG should not be able to leads a normal life and have a normal life expectancy...

best wishes

Susan

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