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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Toots61

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Posted 10 January 2010 - 11:49 PM


Good Morning,

I've recently been diagnosed with Scleroderma but have lots to learn. Couldn't sleep so have been trying to navigate through the website, boy is it large! Is there an easy way to navigate through all the topics?

Thanks!

Toots61

#2 janey

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Posted 11 January 2010 - 04:03 AM

Toots - Welcome to the ISN forums! I'm sorry you have joined us due to your scleroderma diagnosis. We all know how the research and the amount of information can be overwhelming, so hopefully I and others can provide some ideas to make it a little easier.

The ISN medical pages consist of links to thousands of abstracts that summarize studies on scleroderma and its symptoms. When I was first diagnosed I found it easier to research just one symptom at a time (e.g., Raynaud's, difficulty swallowing) If you are researching within ISN (which I hope you do), use the "Search sclero.org" box in the upper right hand corner of the main pages. Type in a keyword and it will give you a list of pages that contain word. You could also start with this link "Scleroderma Symptoms". Just click on one of the symptoms that you want to learn more about and start browsing.

You can also ask specific questions on the forum and I can guarantee that you will be provided direct links as well as personal experiences on the subject. You are welcome to start asking now. Do you have a specific question in mind? If so, please post. We'd love to learn more about you and help you in any way possible.
Janey Willis
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(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Jeannie McClelland

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Posted 11 January 2010 - 07:45 AM

Hi Toots,

I'd like to welcome you to the Forums too. We're a friendly, sympathetic, and understanding group of people here, always ready to listen and share our experiences with scleroderma. It's a great community and a lot of fun to visit. In fact, I'd say that it has definitely been the silver lining in my own personal cloud of scleroderma. :)

There are several different Forums, which you can explore by clicking on the Sclero Forums tab in the purple bar at the top of the page. We have the Welcome Forum where you are now. This is where new members start out and where you can find the Guidelines (rules and tips for posting messages on the Forums) and Frequently Asked Questions. Once a member 'graduates' from the Welcome Forum, the next move is to the Main Forum (for members who have a diagnosis) or to the Undiagnosed Forum for those folks who have symptoms of an autoimmune disease but no concrete diagnosis (an all too common occurrence - it can take a very long time to be diagnosed). We also have a News Forum, where an average of 9 new articles dealing with scleroderma, other autoimmune diseases, and general health topics are posted each week. And then we have the Fun and Friendship Forum where members can chat about non-medical issues. It has a Kitchen sub-forum and is a great place to visit to share recipes, etc.

So once again, welcome! Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
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International Scleroderma Network

#4 Amanda Thorpe

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Posted 11 January 2010 - 11:51 AM

Hello Toots

Welcome to the forum and to the world of scleroderma, it's never a boring one that's for sure!

Enjoy having a look around the site, there's so much top quality information you could be reading for days!

Take care and keep posting.
Amanda Thorpe
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International Scleroderma Network (ISN)

#5 Sweet

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Posted 21 January 2010 - 10:12 AM

Hey Toots, let me add my big ole welcome to you!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)