Wegener's Granulomatosis Support Group

Hello everyone, our daughter (Jenn, 23) was just diagnosed with WG on Dec. 5th after having a kidney biopsy the day before. At first they thought it was Lupus but when the final results were in De. 16th, it was confirmed to be WG. Question: She has not lung problems at this point, just kidney. Is that normal with WG?

Hello, I have been diagnosed with WG about a year now and I still don't understand it. I am currently in a relapse. My WG is just in my lungs. It is my understanding that it can effect anyone differently, From skin sores,lungs,upper respiratory and saddle nose to kidnys. Unfortunately, I dont think there is anything normal about Wegener's Still to many Q's no one knows the awnsers to yet.It is an connective tissue disease,an inflammation of the blood vesicles that restricts blood flow that effect certain organs in the body. But prhaps there is some one who knows more in detail than I do about this that can help you with your Question. I hope your daughter is feeling better soon, Laurie

first welcome to our little group.this must be a scary time for your family.the first thing to know about wg is there is'nt a normal for wg we all have it just alittle different.some of us have areas not affected in the beginning, but may be later, or not at all.your daughter being young is an advantage, from all i have read being young when you get it seems to make treating it ----i won't say easier, but maybe being young your body is stronger.how is she doing now ????does her dr have any experiebce with wg ?????that is also important.please know we are here when you need us.

kimberly

Kimberly,

Thanks for your response. They have just started our daughter on daily oral cytoxan and will increase the dose as her body can tolerate. Her kidney function is just a little better than when she was in the hospital almost a month ago now. Her Dr. has referred to another patient he has treated who has had WG for the past 35 years. When treatment was first started, before they even had the test results back, the Dr. said he suspected either lupus or WG. So, I think he has a good handle on it. Our daughter, Jenn, seems to be handling it pretty good as a whole. It does have it's moments when she feels overwhelmed. But we are all doing pretty good at this point.

Thanks,

Paul

Thanks, Laurie. We are doing ok and working through the changes needed. Thanks for your post. --Paul