We've been published Weggies - Congrats to you/us all

[marta]

Hello All,

I've been off here for a couple of years, the side effect of remission, but I had to come back and give you all a BIG GIANT KUDOS.

We have been published in a medical journal (Bone Joint Spine) with the data we mined right here on this forum.

The biggest thanks goes to our fearless and humble leader, Andrew, for putting the link to the little survey I dreamed up with (at the height of a flare in 2010, on three days of Solumedrol - ha ha) on the top of each page off this forum in late 2010, 2011, and 2012, where we collected almost 1,000 Wegener's patients' responses. Probably one of the biggest collections of Weggie data on planet Earth, all thanks to this forum, and Andrew, and of course all of you.

I don't have access to the article because I'm not a real doc, but I know that Hammie pulled it off earlier, (just before I decided to leave Facebook, and all other social media behind mid April - the 21 Century version of monastic retreat :biggrin1:)

I'm sure someone on here will also be able to pull it out so that you can read what we've done and how we've changed the way that science perceives us patients and what we can do to further the cause.

This article was done with my amazing, super, unreal doc, Elaine Yacyshyn, whose care I was blessed to land in after a crappy experience with my first rheumy and due to the total encouragement of this group on this forum. I'm in a flare right now, awaiting RTX, but as soon as I lick this road bump, Dr. Yacyshyn wants us to work together on other cool Vasculitis projects, so there.... you/we have started something special where the patient's voice becomes a tool of positive change, and I'm grateful to all of you, and all that you do.

Here's the info on the article WE have gotten published together.


Article title: Patient-driven online survey on the clinical manifestations and diagnostic delay of granulomatosis with polyangiitis
Article reference: BONSOI4314
Journal title: Joint Bone Spine
Corresponding author: Dr. Elaine Yacyshyn
First author: Dr. Elaine Yacyshyn
Online publication complete: 1-APR-2016
DOI information: 10.1016/j.jbspin.2015.07.014

Dear Dr. Yacyshyn,

We are pleased to inform you that the final corrections to your proofs have been made. Further corrections are no longer possible. Your article is now published online at:

Elsevier: Article Locator (http://dx.doi.org/10.1016/j.jbspin.2015.07.014)

Please note that access to the full text of this article will depend on your personal or institutional entitlements.
This article can already be cited using the year of online availability and the DOI as follows: Author(s), Article Title, Journal (Year), DOI.

Kind regards,
Elsevier Author Support


Much love, strength, respect and gratitude to you all.

:thumbup:

Marta

[Pete]

Thanks, Marta!! I hope you get past the flare quickly!!

[Debbie C]

That's awesome Marta. Hope you get to feeling well soon....keep us updated.

[Alysia]

Wow. That's wonderful. Thank you so much marta. So nice to see your name at the top of this article.
I was not here yet when you did that poll. So I now checked at your threads and found this one :

http://www.wegeners-granulomatosis.com/forum/new-member-introductions-stories/1225-survey-results-check-em-out.html

I was not able to download the article in your link above. I hope Hammy will come and attach it. I am curious....

I hope your are kicking the beast.. hang in there. I keep you in my prayers. I have a private messenger to take them straight to God.. and he loves you dearly. Me2 ♡

[Alysia]

Oh. The link of the search results inside the search thread is not working for me.. :(

[andrew]

Nice work Marta!! Great work and thanks everyone that responded to the survey. You're all super awesome :)

[mishb]

Well done Marta and thank you for all of the hard work that you always do for raising awareness of WG/GPA
Even when you were getting sicker, you have never stopped.

I hope you can have the RTX very soon and it starts to work it's magic for you once again.

Until then, take extra care of yourself and ..........

[drz]

One can get the article through on line access at many universities and other libraries. If you can log into any of those libraries, you should be able to download the article. The links take to you to other places where you can search for some institution that can give you access. The University of Calgary is one of those. Lots of libraries are listed for UK, Canada, USA and most countries. Another option is to pay $36 to purchase the article. Education is not cheap:sad:

[renidrag]

Well done Marta. Hope you get better real soon.
Dale

[vdub]

Very good, Marta! You have been missed. I hope things are going well for you.

[Geoff]

Well done Smarta Marta! Even when this crappy disease lashes out at you, you manage to kick it right where it hurts!!

Big thanks go to Andrew for facilitating this epic study and of course all you wonderful people out there.

Who knows, this could be just the decisive step in starting that snowball down the mountain to finding a cure. :thumbsup:

[Jules]

Marta, that's amazing! The survey was one of the first items I looked at on this inspiring site when diagnosed in Jan 2011! Hope you kick this flare soon! x

[pwc51]

Well done Marta, very proud of you. I hope your experience with RTX is as good as mine? I have had 3 flares, each treated with RTX which has worked quickly and effectively. The last was now about 18 months ago - still on MTX for maintenance but no Pred. The best it has been in almost 7 years since I was first diagnosed!

[marta]

Thanks you all.

It's pretty cool what we can do together. That's the moral of this post.
We are insanely strong and powerful when we stand together.

As for the flare... it's all good. Ridden this rodeo ride before. I know the drill (although the exponential pred expansion is always a surprise in the mirror, whether you've been there before or not, but I'm taking photos every couple/few days and will make a time lapse video of the expansion/shrinkage to help the newly diagnosed know that it DOES IN FACT GO BACK TO NORMAL - ha ha, you know me, gotta make lemonade somehow.)

Just got approved for the RTX yesterday and the dates are set. May 30, and June 13, and then back on the road to normal. RTX has worked great for me as well - had it twice (2011, and 2012) and have been great ever since until this bad boy flare came up, but it's all good. It's like final exam time. I get to put into practice all I've learned over the last six years, and I feel strong, empowered, on equal terms with the docs and specialists, and fearless. It's actually quite a cool experience going through it with this state of mind instead of the first one. Might I say, that I am grateful to get to experience the disease in this way? Brian would say no, but I kind of am.

Thanks to you all for your kind words, and support, and here's to changing the face of publishing and science and healing - TOGETHER.