Does invisible illness make you question your identity? Do you often find yourself asking, “Who Am I Now?” or find yourself trying to explain this to others who do view you as ill? Join Tiffany as she provides tips to help you understand your ‘new identity’, empowering you to begin to overcome the invisible stigma and teach others what you see isn’t always what you get. Instead of asking yourself “Who am I now–after this diagnosis?” She will point you toward the real question you should be asking yourself.
Tiffany Westrich is the Founder and CEO of the International Autoimmune Arthritis Movement (IAAM), the 1st and only nonprofit to focus solely on the primary joint diseases that include an autoimmune component. She is one of two IAAM Officers who serves on the Advisory Panel, is President of the Board of Directors, and is a key participant in creating and managing every facet of the organization. IAAM is 100% created and run by those affected by these diseases and the programs are created to coordinate with other nonprofit efforts globally; so IAAM is designed to collaborate, not to compete, with other groups in order to best serve the community.
IAAM established World Autoimmune Arthritis Day (WAAD) in January of 2012, which serves as an annual, online Virtual Convention focusing on awareness and education. This event is global, uniting dozens of nonprofits and support groups around the world who all provide resources for those seeking out Autoimmune Arthritis information. Tiffany acts as the Event Coordinator and Host, as well as monitors and participates in all live presentations and chat sessions. The event was such a success that IAAM was invited by the European League Against Rheumatism (EULAR), the Event Coordinators of World Arthritis Day (WAD), to bridge a WAAD and WAD partnership which aims to bring more focus to the Autoimmune Arthritis diseases.
IAAM has only been a 501c3 nonprofit since May of 2011, but they continue to make waves in the community with their cutting edge programs and initiatives. Current programs include the Media Awareness Hotline, the Juvenile Arthritis Awareness Movement (which will grow into a separate movement for each disease under the Autoimmune Arthritis umbrella), and the Medical Awareness program, which is in development and will branch into educational services for practitioners and medical schools around the world. They are also working with researchers in the arthritis in autoimmune disease community to establish better understanding about the similarities between the Autoimmune Arthritis diseases* , which in turn should promote earlier recognition, diagnosis and treatment.
Tiffany also serves in the NIAMS Coalition and has flown to Washington DC as a Patient Advocate with both the American College of Rheumatology and the Arthritis Foundation on several occasions. She often participates in a variety of panels, including most recently as a Consumer Reviewer for the American Institute of Biological Sciences (AIBS), assessing clinical trial studies for a variety of arthritis diseases. In addition to public and online advocating, Tiffany writes a blog, Autoimmune Arthritis = Autoimmune Disease+Arthritis, and has been published in a variety of sources such as MyRACentral.com and The Rheumatologist. She has worked professionally as a public speaker and continues to speak at events pertaining to Autoimmune Arthritis awareness and education, including hosting presentations at the Arthritis Foundations’ JA Conference 2012 and creating and online, interactive classes in awareness and wellness education.
*Autoimmune Arthritis diseases include Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, Sjogren’s Syndrome, Systemic Lupus Erythematosis, Juvenile Arthritis, Still’s Disease and also included under this umbrella is Mixed Connective Tissue Disease and Undifferentiated Connective Tissue Disease/Undifferentiated Spondyloarthropathy. These are the diseases, as classified by IAAM and a team of rheumatologists, that meet the criteria for primary joint diseases with an autoimmune component. While other diseases are autoimmune and can involve the joints, given they are not primary joint diseases, but rather primary gastrointestinal or vascular or muscular, etc, they are considered “Autoimmune Arthritis related diseases”.
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