Free book about GPA

[Debbie C]

I thought some of you might be interested in this. I get a newsletter every month from the VF Foundation and this month there is an article about a free book you can get about GPA and MPA. It states that this is the first book written about it for patients that covers symtoms,diagnosis,treatment options, complications, relapse and remission. It also states it discusses how to communicate effectively with your drs. To get the free book you can either e-mail [email protected] or call 816-436-8211. I just called and was asked to leave a message with my phone # and someone would call back. I told them what I wanted and gave them my address. It looks like it might be pretty good so I thought I would share if anyone was interested.

[Debbie C]

I received a call back from Joyce Kullman with the VF Foundation and said my book will be sent out tomorrow. I told her about the forum and that I had posted the info on here and she was thrilled. She said the more people that have info the better and that the book was a collaboration of several people ( drs. and others. ) I had spoken with her before regarding the Fl. symboisim (sp ?) but tonight she was soooo funny.She said a lady she works with brought in some expresso jelly beans and she had been eating them all day until she found out what they were and she was talking a mile a minute and said she couldn't stop, and she couldn't...we must have talked about 10 min. about different tv shows and whatever came to her mind !!!! But she said this was a really good book especially for those just being dxed so I hope ya'll take the time out to get a copy.

[Birdie]

my book will be sent out

Please update us when you get it.

[Debbie C]

Please update us when you get it.

Birdie..I am sorry.I never officially welcomed you to the group. I did read your story and you surely have been through the wringer. You are a really strong person to go through all you have. Glad you were able to find the group and that they seem to have to have things under control with you.
I will let ya'll know when I receive it but everyone can order it and its FREE ,just use the info above.Same with their newsletter.
I noticed the thread you started wanting to get info together...this book may help.

[whatthewhat]

I hope it's the book underwritten by Genentech. I got a copy hot off the presses at a Genentech booth at the local Arthritis Foundation Walk but have had trouble getting copies thru the web. And yes, it's a bookId definitely hand someone to explain about the disease.

[Debbie C]

wtw..I should be getting it today so I will let you know. If you go to the VF website I posted above they may have a picture of the book, they did in the newsletter. You can always call them like I did. This will sit on my coffee table for awhile so maybe my family will look at it.

[Wegetarian]

Thanks for the info!

Sent them an email, and asked if they have an electronic version available, as shipping costs over here would probably be quite a lot.

Was really surprised to not see anything about it on their webpage.

[LCL2013]

I called last week and requested the book. She didn't say how long it would take to receive, but I can't wait to check it out.

[Debbie C]

I received my book the other day, it took about 4 days to receive it.
wtw..it had on the inside cover the resource was provided by Genentech,so you probably got the same one. There are pics of 3 people on the cover and 1 is a Dr. Jonathan Scott Coblyn.
Wegetarain..they may not charge any shipping costs at all ???
Unfortunately I haven't been able to read much of it.my boyfriends mother had been taken to the hosp. first they thought it was her heart than a stroke so I have been spending a lot of time there and I have other issues going on on the home front but I did happen to notice that at the end of the book it mentions this forum to go to for info and support..pretty cool,huh ???
As soon as things get more under control in my life or if someone gets the book sooner more info can be posted.

But a lot of the book seems to be questions and answers and about different meds and places to go. From what I was able to skim thru it is good.

[Wegetarian]

Wegetarain..they may not charge any shipping costs at all ???

No, they didn't charge anything and said they were happy to send me a copy. Still, even though I'm not paying for the postage doesn't mean its free... I'd rather have them use the money for doing other useful stuff while I could just as well read a PDF (and I'd get it today instead of after weeks).

[Wegetarian]

I got the book recently, a long with a friendly hand written letter. Haven't finished the book, but it appeared to be well written have some decent information. Here is a picture of the book as they didn't seem to have it on display on the VF website.

http://i.imgur.com/9mzFeAC.jpg

[whatthewhat]

Yes, that's the one I have too. I like it a lot.

[Alias]

It's worth having. There's not much in it that most of us don't already know, but it's a good distillation/outline of what GPA is and how it's treated. It's a quick read. I think it would be especially valuable to family or friends who want to have a basic understanding of what the disease is all about.