Wednesday, April 24, 2013


Today’s Prompt:
  • Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self-advocacy!

You would think this would be an "easy" topic today, but because there is so little out there as far as knowledge and awareness for AOSD that means there is also very little to "find" when looking for answers or help.
The first and foremost place to go after a diagnosis of AOSD or looking for info for a friend or loved one id the International Still's foundation ---->ISDF link This is the ONLY official place to get answers, questions answered, find support, get pamplets sent to you, join a live chat, or an online support group. The ISDF also hosts a convention every couple of years so that you can meet fellow dragon slayer's and create bonds and friendships...this is very important because we are few and far between. There are not any local support groups or "in real life" support groups anywhere in the worls for Still's at this time... the internet and the friends you make through the various online support groups will be your life line and become a huge part of your life and your journey with still's

Facebook, there are surprisingly a few different still's support groups on face book (you will discover that although the groups are different so to speak that the same people are in each and every group with a few exceptions based on personality and conflicts) In the last 2 years this form of "real time" support has become the primary way those of us with Still's communicate (prior to this we used an email support group or the weekly live chat sessions) I can't tell you how much these Facebook groups have changed my life and the amount of support available as well as finding friends all over the world who share my illness. I will list these Facebook pages below. There are also various groups for autoimmune illness in general (and in the beginning I did use them but now there is more accessibility to others with Still's so I tend to stick to those groups because our illness really is like no other and most people even if they DO have an autoimmune illness usually just don't understand us or our illness because it is so different than anything they know....and judgement happens.... we are just "that" different

you can find "little blurbs" about us on places like the arthritis foundation, the rare and orphans disease page, and a general list of auto immune disorders but they ALL will send you to the International Still's disease foundation I gave the link for above.

There is also a group group called Stills R Us and they can be found here ----->Stills r us link
 they seem to be mostly catered to the UK right now but I do often pop in here as well and they have some great merchandise to show your "stills" pride

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