Just got diagnosed

[latty]

Hello al
My name is Latty and my friend Rox, 52 years old female just got diagnosed:(
She is from Green Bay WN an is at the Mayo Clinic in Minnesota right now.
I have been trying to find some books about the disease and learn everything we need to know. I am hoping you guys can help me please!
Any great books you can tell me about?
Also. I live in South Florida and would like to attend some support groups. Does anyone know of one?

Thank you so much. This forum helped me understand a lot about this evil disease.

Keep up the fight.

Latty

[Dirty Don]

Welcome Latty, this is nice of you to do for your friend...a support system is soooo important. Here's a link to the Vasculitis Center, Vasculitis Clinical Research Consortium (http://rarediseasesnetwork.epi.usf.edu/vcrc/) , which can supply you with a lot of info. As you know, the peeps on here are great, knowledgeable, and, yes, experienced! Yikes! Anyway, ask questions, share experiences, etc. You'll get a lot of info! Best of luck to you both!

[drz]

Hello al
My name is Latty and my friend Rox, 52 years old female just got diagnosed:(
She is from Green Bay WN an is at the Mayo Clinic in Minnesota right now.
I have been trying to find some books about the disease and learn everything we need to know. I am hoping you guys can help me please!
Any great books you can tell me about?
Also. I live in South Florida and would like to attend some support groups. Does anyone know of one?

Thank you so much. This forum helped me understand a lot about this evil disease.

Keep up the fight.

Latty

Ask her to go to the patient library at Mayo and they can provide her with some info to help get you both started.

[rif]

Hi Latty you sound like the perfect friend to Rox, it is so important for those supporting people with WG to understand as much about the disease as possible.
You will be able to learn at lot on this forum and get some vaulable advice.

Rif

[pberggren1]

I know some people on facebook that have Wegs that live in Florida.

[annekat]

Latty, you can't go wrong by sticking with the forum..... so much to learn here! Keep us posted on Rox!

[shannonkop]

Latty,

I would call the Vasculitis Foundation. When I first got diagnosed I called there and they sent me a ton of information to read and they also have contacts in your area that you can call and talk to, etc. I called a few and it made all the difference to me. I'm a contact for my local area. If she wants to talk, send me a private message and I would be more than willing to talk to her. She's lucky to have such a caring friend as you.

Sending positive thoughts.

Shannon

[HopeinTN]

Hello and welcome. You are at the right place. I'm so glad Rox has you as a good friend and support is very important to anyone with Weg's/GPA. I hope you get all the info you need. From what I hear Rox is in good hands at Mayo.

[mishb]

Hi Latty,
I'm glad you have found us on behalf of Rox and hey, if it wasn't for her getting sick, you would never have met this loveable, jolly bunch :w00t:

I'm in Australia and sad to say the we don't have any external wegeners support systems in place (apart from our own families and friends), so this forum and the people on here are stuck with me. :tongue1:
I hope when Rox is able, that you will introduce her to this site so that we can also help her along the way.

Best of wishes to you and better health to Rox over the next few days/weeks.

[annekat]

I'm in Australia and sad to say the we don't have any external wegeners support systems in place (apart from our own families and friends), so this forum and the people on here are stuck with me. :tongue1:
I think those support systems may be pretty scarce here, too, though some areas may be lucky enough to have them... but this forum feels at least as good as any of those could be.... we don't have to go anywhere, we can be in our PJs or check in any time of day or night from wherever we are, with the right electronics..... it is just so easy and we will almost always get the answers we need. This is just a stellar group of people, IMHO! And, if I can speak for everyone, we are happy to be stuck with you, Michelle!:thumbsup:

I, too, hope Rox is able to get on the forum herself one of these days, but I think it is great to have friends like you on here, Latty!

[Col 23]

Hi Michelle I agree, nothing in West Aust also. Very Sad.
Hope Latty and Rox find the support required, its a big shock in the beginning and takes a lot to get your head around it.
cheers Col 23