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If you go to the Vasculitis Foundation website there is a place to sign up. I don't know if they are taking "walk-in" registration at the door. Call or email them to ask.

My son was diagnosed with Wegener's 3 years ago. He has been in remission but last fall he started having more protein and blood in his urine. In Feb. 2013 he had a kidney biopsy which determined...

My son and I will be going to Philadelphia. It will be great to see some of you there! We went in 2010 just after he had been diagnosed and it was really great for both of us. I learned the...

Thanks so much for your responses and reassurances! I, too, think that in 20-30 years kidney transplants may be very different than now and so might my son's health. one of you asked about his...

At my son's last nephrology dr. appt. they mentioned that when he is in his 40s, based on his last kidney biopsy, he will definitely need a kidney transplant. He is 17 now, was diagnosed at 15. I'm...

Hi Ian,

My son was diagnosed 2 years ago when he was 15. He had a lot of kidney damage, missed a lot of school and it took him a year to get back to normal with school and activities. It's great...

Our neighborhood lab won't give me the lab results but I do frequently either ask them to call customer care and have them refaxed to the doctor or call customer care and ask them myself. I find...

Wow, such a story! I totally understand. Most of the time if my son has any symptoms I end up dealing with a pediatrician, one or two pediatric nephrologists (one is a clinical fellow that has been...

Chicago is closer but I have a conference in Florida a few days after the Atlanta meeting. My son doesn't want to go because it's just one day and it doesn't serve the purpose for him of socializing...

There is apparently a trend for those with Kawasaki's Disease to be in the path of the Asian tradewinds. There is an article in the Vaculitis Foundaiton Newletter that I just got today but have not...

Interesting discussion! My son has both adult and pediatric doctors. The pediatric ones want to investigate and recheck things immediately. The adult doctors want to watch and wait.

Sue

Thanks for your thoughts about the abdominal pain. It is still there when he presses but otherwise it's gone. The did find a large amount of protein in his urine. Unfortunately the labs were not...

Good luck to you Jan. Any chance you are going to the Vasculitis Day in Atlanta this summer? How about the rest of you?

Finally today a doctor was able to see him while he was having the pain and decided it was exactly where the appendix is. So he was sent to get an ultrasound and when that was negative (the couldn't...

Happy New Year everyone! My 17yo son has GPA. I've written about him before and have appreciated your kind and wise comments and support. Most of his maladies are under control for now but there...

Norcalian can you please let me know publicly or privately who your rheumatologist is? I need one not for Wegener's but for other issues and I live in Berkeley. Thanks!

If they require a referral you might not get a response from Dr. Chung. I believe we had to get a referral in order to get a second opinion from her.

Call her office and ask what the status of...

The vasculitis specialist (listed by the Vasculitis Foundation) in the rheumatology department at UCSF is Sharon Chung, MD. My son has been her patient for the last year. She is thorough, straight...

Hi Stephanie,

I don't know if you're found the Vasculitis Foundation website yet. They are having a 1-day conference for WG patients and family in Chapel Hill on May 14. When my son was newly...

Yes, they have cultured his throat for strep twice now and his nose for flu. They also did blood cultures a couple weeks ago. All were negative. I just spoke to the rheumatologist and he's going...

He's on azathioprine. His rheumatologist said recently that her preference for sinsus/nasal flares is methotrexate but he can't take it because he has kidney damage. We live in California but we're...

First I want to thank all of you for being here! I don't write often...only when I need something usually so I hope you don't feel used. My son was diagnosed with WG/GPA in May 2010 when he was in...

Berkeley, CA USA.

Just curious..is anyone planning to attend the symposium in Chapel Hill, NC on May 14?

I met a couple of women from Prince Edward Island last year. They both have WG and said that everyone there knows someone with WG and they wonder why someone isn't studying it since they have such a...