Wegener's Granulomatosis

LegacyUser

Hi,

I'm a regular boardsie but posting here unreg for this.

One of my parents found out a few months back that the problems/illnesses they were having had been diagnosed and the doctors knew what it was. They told my parent that the condition they have is called Wegener's Granulomatosis. While it's not nice to find out you have an illness like this it was reassuring for my parent that they at least knew "the name of the enemy".

The doctors haven't really explained it very well or at all to my parent. Additionally they're very frustrated that no advice has been given to them on how to deal with Wegeners day to day, or any medication that will help.

I've looked up some information on this syndrome online but a lot of it goes over my head.
Is there anyone else out there familiar with this? We'd appreciate any advice you can give.

Thanks!

LegacyUser

Hi,

Just wondering if you'd found out any more about this? A friend of mine was recently diagnosed with this and like you, nobody has really told us anything about it...we've been left to deal with this with absolutely nothing to go on except google..which let's face it can sometimes give you a lot of scary information that may not always be accurate!
If you know any more about this disease or know where I can go to find out more, please let me know.

Thanks!!
WG

LegacyUser

What hospital is your parent attending, if you don't mind me asking?

LegacyUser

Hi there. To be fair, I don't think anyone with WG is going to put the hospital that they are being seen to up here, as it's such a rare condition that if you worked in a hospital you'd almost be able to pin point the patient and speaking personally I wouldn't like to have my friend identified on this blog. No offence meant, just giving my own opinion about it. Also I don't want to go bashing any particular hospital as I think the staff do a great job, it's just in this case there's very little info out there about this condition.

LegacyUser

Apologies, my question was vague and I understand your concern. You'd be surprised how many people have this disease and therefore, I believe I can give you the information below.

I don't have this disease myself but my wife does and was diagnoised over two years ago.

St James Immunology have produced a booklet on Wegener's and my wife found it answered most of her questions. Please find link below which includes the booklet, contact details and information on the clinic. I hope this is of help.

http://www.stjames.ie/Departments/DepartmentsA-Z/I/Immunology/DepartmentinDepth/

LegacyUser

Thanks very much for that link. I've seen it before but it was no harm reading it again and finding out more. I think it's just difficult when it's a rare condition that not too many doctors even know about. There's not much information out there as to how it will affect the patient on a day to day basis. I know my friend can get very tired during the day but they don't know whether this is down to the condition or not. Little things like that are hard to find out about on the internet. Thanks very much for your help though. Much appreciated.