New here

[kevinallen]

Hi im new here. Dont want to write my entire story but have it on here. Living as a teenager with Wegener's Granulomatosis

[Al]

Kevin--I looked up your story, and it is a doozy. And you will be dealing with this the rest of your life. (I will too, of course, but I am a relatively old guy. This shouldn't happen to anyone your age!)

Plasma exchange is often ordered when there is lung involvement, and, in my experience, is a lifesaver. For me, inflammation declined almost immediately. Interestingly, they say it also reduces the chances of relapse. (I had one anyway.)

Thanks for sharing, and welcome to our band of brothers, sisters, and malcontents!

Al

[elephant]

Thanks for sharing. Welcome to the forum.

[mishb]

Hi Kevin,
Welcome to the forum....but sorry you had to find it.
I'm glad things are now moving in the right direction for you.

Take care

[delorisdoe]

Hi im new here. Dont want to write my entire story but have it on here. Living as a teenager with Wegener's Granulomatosis

I noticed that Rini started an under 40 group on this site...I am under 40 but barely with a child and husband so I dont have much in common to join this group but I would think that you and a few other of the young members of this site could suport each other in ways us vetrans to wegeners cant. just a thought

[pberggren1]

I noticed that Rini started an under 40 group on this site...I am under 40 but barely with a child and husband so I dont have much in common to join this group but I would think that you and a few other of the young members of this site could suport each other in ways us vetrans to wegeners cant. just a thought

Which site is that Leigh?

[delorisdoe]

it is on this site phil I think I found it on my profile page maybe there was a tab for groups.

[delorisdoe]

yes phil if you go to your profile page you will see a join groups option.

[Dryhill]

Hi Kevin,

Welcome to our very select band of brothers and sisters. Like Al I am an old fogey and feel sad that you have WG so early in life.

[Sangye]

Kevin--I looked up your story, and it is a doozy. And you will be dealing with this the rest of your life. (I will too, of course, but I am a relatively old guy. This shouldn't happen to anyone your age!)

Plasma exchange is often ordered when there is lung involvement, and, in my experience, is a lifesaver. For me, inflammation declined almost immediately. Interestingly, they say it also reduces the chances of relapse. (I had one anyway.)

Thanks for sharing, and welcome to our band of brothers, sisters, and malcontents!

Al

There is a study under way investigating the use of plasma exchange for lung involvement. It hasn't been used much for lung-only involvement. It's usually reserved for severe kidney involvement. Personally I've always felt it would benefit me. Just a gut feeling. I don't qualify for the study though.