Vasculitis Foundation Patient Information Packet

[pberggren1]

Here is a link to a good patient info packet.


https://docs.google.com/file/d/0Bz_O_lVE9icjaHJ2S2kyWVY3Nm8/edit?pli=1

[NikkiNicole]

I joined the VF on their website and they sent me a massive envelope with all their last newsletters, and some pamphlets and info. I also received two emails from coordinators of support groups, and even a subject with WG!
I definitely recommend this to everyone!

[NikkiNicole]

Wow, that really came out sounding like a television commercial testimonial.

[drz]

Wow, that really came out sounding like a television commercial testimonial.

I joined too shortly after I learned about it and also believes it is a great resource, especially the conferences it helps support and promote.

[Alysia]

thanks, Phil, for this thorough info :thumbsup:

this is something I find encouraging in it:

Long-term remission can be induced and maintained with medications, close management and regular lab tests to help monitor the disease. Treatment can produce symptom-free intervals of 5 to 20 years or more. Some patients will achieve a drug-free remission. However, relapses are common but can be caught at their earliest and most treatable stage, for most patients, by paying attention to patient symptoms and lab tests. WG patients in remission must not hesitate to see a doctor if any WG symptoms return or if they are not feeling well.

[Wegetarian]

I misread it as "patent" and was thinking some crazy americans have patented our disease :biggrin1:

I'll look at that once I'm not as sleepy.

[Alysia]

I misread it as "patent" and was thinking some crazy americans have patented our disease :biggrin1:
.

maybe we can use WG as "patent" :sneaky:
I am using it as a "patent" not to go to events that I should be in them only to "behave". the excuse: too much people, my fragile immune system.... (thanks God I don't have to be kissed on my cheeks anymore by the "drooling" uncles)

but the best will be when someone will find a "patent" to cure this lovely disease....

[drz]

Here is a link to a good patient info packet.


https://docs.google.com/file/d/0Bz_O_lVE9icjaHJ2S2kyWVY3Nm8/edit?pli=1

This is a reference that ought to also be included under other links on good resources for us all. Lot of good info here. Especially about the common drugs we take and side effects from them and common treatments and lab tests. It has lot of good advice and ends with encouragement to seek a support groups cause it is helpful to talk with others who have similar experiences and to remember we are not alone!

[pberggren1]

I'll send you a kiss Alysia......:wink1:

[Alysia]

I'll send you a kiss Alysia......:wink1:

Your's is OK... it is the healing one...

[annekat]

Wow, that really came out sounding like a television commercial testimonial. That's OK, Nikki, I'm glad you told us about it. It never occurred to me to join the VF.... why, I have no idea.

[pberggren1]

Why join them when you have us......:thumbsup:

[mishb]

I tried to join many years ago.
It asks for my phone number and it just doesn't want to accept my Aussie number, and you can't go any further without it.

But Phil is correct, 3 years later and I haven't needed or miss it - I have you guys:biggrin1: