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Managing My Personal Health Record: My Story of Living with Lupus
When I was 15 years old I was diagnosed with Systemic Lupus Erthamatosis (Lupus). My parents and I didn’t really know or understand what Lupus was, but we knew that people died from it and that I needed to be extremely careful with my health. I remember how scared I was, along with being in extreme pain, barely able to walk. In addition I was puffy and losing my hair as a side effect of my medications. For me, the Lupus subsequently caused multiple other chronic illnesses, including Rheumatoid Arthritis, Fibromyalgia, and Depression. I remember going from doctor to doctor, getting test after test and then, one day, somehow, someone lost my entire set of medical records from birth until age 15! -
Call for Participation in the Automate Blue Button Initiative: Enhancing Consumer Access to Health Information
We need your help! In response to feedback received during the June 4 Patie
nt Access Summit, ONC and the Department of Veterans Affairs (VA) will soon be launching an initiative to automate “Blue Button” by developing standards and specifications that allow patients to not only download their health information to their personal computer, but also to privately and securely automate the sending of that data from their health care providers to their personal health records, email accounts, health-related applications, or other preferred holding place. This will ensure that consumers have the most current, up-to-date information about their health at their fingertips whenever they need it.
