IFAA - Register to Walk! Physically or Virtuallly!! You Can Join in!

Who out there lives in or near (or will be in) NYC on September 20th, 2015?

There is a great event that day hosted by American Autoimmune Related Diseases Association (AARDA) to raise awareness about autoimmune disease. International Foundation for Autoimmune Arthritis, official hosts and event coordinators of World Autoimmune Arthritis Day, is attending to support the event and to raise awareness about a much needed AARDA program "ARNet" (Autoimmune Registry Network).

If you will be in NYC on September 20th please sign up to join the IFAA Buttahflies and meet IFAA Executive Assistant, Kerry Wong and other IFAA Representatives. Sign up by yourself or with family and friends but sign up if you care about autoimmune arthritis awareness and have a fun day with IFAA and AARDA!

http://www.ifautoimmunearthritis.org/upcoming-events.html

Early Symptoms of Autoimmune Arthritis Investigation - brought to you by the International Autoimmune Arthritis Foundation!

International Foundation for Autoimmune Arthritis

It took 18 months and over 3500 hours. It required online educational courses in research methods and data analysis in addition to private mentoring from a lead research consultant. It needed cooperation from our friends at the Spondylitis Association of America, Lupus UK, Sjögren's Syndrome Foundation, and International Still's Disease Foundation to serve as Nonprofit Organizational Experts on symptom reporting. It required patients with RA, PsA, SLE, Sjogren's, Ankylosing Spondylitis, and Adult Onset Still's Disease to see if they qualified to participate and, if so, donate 60 minutes of their time to report their disease progression from onset through 24 months.
It required patience, willingness to learn and grow, and the passion to make change in the delays in detection, referrals, diagnosis, and treatment. But we did it.


The 150 page Early Symptoms of Autoimmune Arthritis investigation into the true early symptoms of 6 diseases*, as reported by the patient and compared to current symptom lists published by the ACR, NIH, National Library of Medicine, and Mayo Clinic, will be available for you to download on July 1st from the IFAA website. The results from this investigation will be used to create new, updated Early Symptom Patient Models per disease and by group.


A special thank you to Janssen for making this possible.
*AOSD FULL analysis will not be included in this publication (although much of it will) as the original recruitment was too low for 95% scientific accuracy. The number has now been reached and AOSD will be added to the analysis by the end of 2015.

 Early Symptoms of Autoimmune Arthritis Investigation

Below is my post to the IFAA!

I know that this took an astronomical amount of work from the IFAA and all, plus many more including Janssen that helped to make this all possible. In the hopes that this will be quite an eye-opener for everyone that is involved with Autoimmune Arthritic Illnesses, along with all of the other AAI's that can go along with the "Arthritic" ones. I am proud to say that I've been a part of this incredible bunch of ladies and men. It took many, many long days and nights, to get all of this in order and put into the publication that it is coming in. My hopes are that this will bring even more awareness, more education, more "early diagnosis", more Advanced and Early, plus "aggressive" medications, and treatments; because up until now, the many, many of us that have been through the "fires" of one doctor after the other, one diagnosis after the other, one medication after the other... which may go on FOR YEARS... only to find out something else is causing the problems, or you may have NOT been as "ill" had you gotten proper care from the beginning... as a woman, I know the spill, about, oh, it is your hormones, or you are too "young" to have joint problems, or you are just stressed out... and this from Physicians.... that are supposed to be "specialists"... THEY need EDUCATION also in many ways... so I say again CONGRATULATIONS IFAA!!!! What an incredible feat you pulled off

Rhia Steele