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Updated: Scleroderma FAQ by Ed Harris


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#1 Joelf

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Posted 24 July 2014 - 01:39 AM

The recently updated Scleroderma FAQ is an educational website that covers scleroderma diagnosis and treatment. There are also supplemental technical articles on ANA and antibody testing and scleroderma-related blood hyperviscosity research and treatments. (Also see: Scleroderma Webmaster's Association) Posted 07/24/2014.

 

This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
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International Scleroderma Network (ISN)


#2 Sweet

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Posted 28 July 2014 - 01:30 PM

Thank you :)


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Choclit

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Posted 11 August 2014 - 01:06 PM

Just to clarify a bit, the old Scleroderma FAQ was about 14 pages long and was a bit out of date.  This has now evolved to a full-blown website focused on scleroderma education titled the Scleroderma Education Project and it is now located at www.SclerodermaInfo.org.

 

Here is what is included on the website:

  • A completely updated Scleroderma FAQ, which is now about 40 pages long. It includes detailed information about the new 2013 ACR/EULAR diagnostic criteria, clinical implications of the 9 identified scleroderma antibodies, complete information on standard immunosuppressant treatments including risks and side effects, detailed treatment approaches for all scleroderma related symptoms, etc.  Print versions are available in both US and A4 formats.
     
  • Guide for New and Future Patients - this is a companion document that is focused on getting correctly diagnosed, including a discussion on problems in ANA and antibody testing, how to prepare for doctor visits, baseline and routine testing, and a note for family and friends.  US and A4 print versions are available for this document as well.

There are also supplemental technical articles on ANA and antibody testing and Scleroderma Hyperviscosity.  Three additional articles are under development.


Ed Harris
Scleroderma Education Project
A member of the ISN's Scleroderma Webmasters Association (SWA)
(Only SWA members may post links to their own site in forums posts)

#4 greypilgrim256

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Posted 09 October 2014 - 09:28 AM

Thank you for your work on this Choclit.  I was following you on another site and you helped point me in a good direction for someone newly diagnosed with MCTD and sclero symptoms.