How Does Your Story Fit Into the Puzzle of Autoimmune Disease? Share your Journey with AARDA
Posted on Tue, 28 Jul 2009 15:35:03 by Kristian Hurley
At AARDA we circle the globe advocating for you-the autoimmune disease patient. We tell your stories about difficulties in obtaining a diagnosis, seeing doctor after doctor after doctor, and we talk about your quality of life and the need for innovation in new research and therapies.
In our continuing effort to ensure that your voice is heard we want you to share your journey of autoimmune disease. Some of these stories could be featured in the print news media, a congressional briefing, or a video spotlighting autoimmune disease. Not all stories can be used, but all of them will add to AARDA’s ability to tell your story in advocating for our autoimmune patients and their families.
Develop your story surrounding the following themes:
· Difficulty in Obtaining a Diagnosis – Tell us your diagnosis journey. How long did it take, how many doctors, was your journey short or was it long? What helped you to continue on the path to a correct diagnosis? What did you learn from this experience about health care in America?
· Treating your Autoimmune Disease – Once you have obtained a diagnosis, how did you obtain proper care? Do you have coordinated care with a team of physicians? Do you have one specialist who manages your treatment? Was it difficult to find a physician? Have you used any treatments off-label? Where you a part of a clinical study?
· Living with Autoimmune Disease – How has your quality of life been affected by autoimmune disease? How have you learned to live with the disease? Tell us how you cope with your autoimmune disease.
· Your Autoimmune Disease Quotient – We know that autoimmune disease clusters in families. Did you know of other autoimmune diseases in your family prior to diagnosis? Did you recognize them as autoimmune before you became ill? Share your families story with autoimmune diseases.
Rules for Submitting your Story
You must be 18 years or older however if you have a child with autoimmune disease you may share your child’s journey
Please keep your story to 500 words or less.
Please write briefly and concisely.
Submit your story to khurley@aarda.org.
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Tue, 06 Oct 2009 14:54:32
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