New to site/my son has Wegeners

[Trish1217]

I just joined this site and my son was just diagnosed 3 weeks ago. He is 18 years old. I am very sorry your son has to go through all of this. I really hope he gets better. I never heard of WG until 3 weeks ago. My son was in the hospital for 6 days with a sinus infection they thought had turned into pneumonia. Watching him get sicker and sicker and having doctors tell us he might have to go into ICU and that his symptoms mimicked HIV was terrifying. Why can't they do more research on this terrible condition?! My son is a senior in high school, with college scholarships lined up, and now I am afraid his future will be compromised. Good luck to you and your son.

[annekat]

Trish, welcome to the forum. I'm so sorry to hear your son has come down with WG at this important time in his young life, when he's looking forward to college. It sounds like it happened quickly and they were able to diagnose it before it dragged on and on and did a lot of damage to his sinuses and lungs. In my case it took 2.5 years of "sinus infections" before it went into my lungs and got bad enough that I was dx'ed. That is not uncommon. In your son's case, they can hit him early on with a good dose of the right treatments, and it could take a few months, but they should be able to suppress the progress of the disease, and he should feel a lot better. I can't say whether it will interfere with his college plans, but he is still young and if it has to be delayed, there is still a great deal of hope he can go on with his life as planned. I know it must be very scary. I'm glad you found the forum and we can be here for you to share our experience and knowledge, and to offer some support and encouragement. I know there are others here who were diagnosed that young or younger. Be sure to search the archives for any aspects of this you would like to know more about. The viewpoints and experiences on here are varied. So feel free to get on here any time and ask away or express your feelings. I wish I could answer your question about the research. I know it is being done, and has been for quite some time. That's another thing to explore in the archives or on the web. There's a trend lately to look at all autoimmune conditions as a group, in hopes of discovering what the "common thread" might be that causes the immune system to go haywire. Look for posts by Marta (see Member list under Community above.) She has been very involved in promoting this idea and has links to her blog and other resources on her posts. Also try the Vasculitis Foundation and VPAN (Vasculitis Patients Advocacy Network) for lists of doctors and lots of other information. Best wishes to you and your son, and let him know from us that there is life after a Wegener's diagnosis.