Big HELLO from CROATIA

[Col 23]

Welcome Sebastian. Sounds like the doctors have you Wegs under control. Glad to see you are having fun. Sorry I am fairly newly diagnosed Dec 2009 so still learning about medications so cant answer your questions. Maybe someone in the group will sort you out. Hope all continues to go well.
cheers Col 23

[Lola]

It's nice to meet you, Sebastian. I'm glad you are able to be so active and that you're having fun! THe vacation photos are great. I've read that Croatia has some beautiful seaside destinations.
Please keep us updated.
Lola

[Terri]

Sounds like things might be under control for now.
Hope it stays that way for awhile.
The pictures look inviting. Glad you were able to enjoy.
I go to face book sometimes. I haven't updated for some time.
What are you under? I will look you up.

[Sangye]

How are you doing, Terri?

[SebastianCRO]

@ Terri - u can find me by tiping in - Sebastian Brletic ; from Zagreb or Croatia
hope u`ll find me

take care
seb

[jola57]

Hi Sebastian and welcome. Glad you found us, it will be interesting how this disease is treated in Croatia.

[Terri]

Hi Sangye,
Thanks for asking. I've said it before that if I make it through April I will have gone a year flare free. I don't think it will happen. For a few weeks now I've been having pain in my legs more and sometimes my ankle and calf feel like they are on fire. Even my feet hurt more. Sometimes I have to wear compression stockings to help with the pain. I'm looking for excuses as to why it can be and have come up with a few so I don't know.... I have an appt on the 12th with my rhemy. I'm not looking forward to a Pred increase. I'll let you know what happens.

[elephant]

Terri how much prednisone are you on now? Glad your seeing your Rhemy April 12 on a Monday! Good luck and hope that fire pain in your leg will go away real soon!

[SebastianCRO]

Hi all.
Since a while now I had an idea of coming over (to zi USA)
- that was my dream since i was like 10 to go there and explore,try to "live the life", meet new people ... and so on..
and now,when I got "sick" i had to cancel my collage, my work, so mostly I'm at home, spending my days doing nothing "important" so to say.

Sooooo

I was wondering. I would like to contact someone in the states,like the mayo clinic or a doctor(s) that make great things happen with diagnosing Wegeners.
To ask them if I can somehow help in the research. Trying new meds and stuff. I had a chance to be useful in some ways and hopefully See some parts of the states.

my Q for u is.
Is that even possible,do they need someone,whats ure personal opinion on that and to whom can I send an inquiry.

thnx
sebastian

[Sangye]

Sebastian, it's great that you're thinking about being useful! The major centers all have ongoing research studies. Each study has criteria for participants. Usually the way they work is that you go to the center for exam and lab work every few months and maybe take a trial drug. The best thing to do is contact each center's Research Director and ask.

Here's the link to JHU's Vasculitis Research Dept
Vasculitis Research at the Johns Hopkins Vasculitis Center

Here's the page with info for International Patients
Appointments at the Johns Hopkins Vasculitis Center