Transforming the way others see the Lupus survivor. To help inform the Lupus survivor & their families. We share knowledge & understanding of Lupus, its diagnoses & treatment options. I have been surviving with Lupus since the age of five. It took several years for me to be diagnosed. Like most that are waiting for a correct diagnoses of Lupus, I had been "labeled" with many different conditions, one being rheumatic fever, lazy, crazy, and worst of all a hypochondriac. None of course, where true. My diagnoses came at the age of 32yrs. That's 27 years after all these other labels. Several family members of mine have also been diagnosed with Lupus. And, a few others have actually passed from complications from it. Two being my Grand Mother, at the age of 38. As well as my Mother, at the age of 53. I am now 55 years old, and thank God everyday, for the "extra" time I have been given. The tragedy of my Mothers' death, was that she was never treated, nor diagnosed til AFTER, her passing. The research doctor that finally diagnosed me at the age of 32 had asked all the right questions of me. And when I shared that my Grand Mother, as well as my Mother, had passed at such early ages, he asked for their medical records. My Grand Mother Mary had passed away from bleeding complications due to an early delivery, the same that I had experienced with my Daughter's early delivery, and concluded that her death was more than likely attributed to Lupus
The name of this site comes from the "Outrage" most of us that survive with Lupus everyday, have felt or feel, due to little or no advancements in diagnoses or treatment options . We are also "Outraged" that we are still being manly treated by doctors that are known as Arthritis doctors, or Rheumatologists. Another ms- conception that has actually carried over into the medical field. Although a small percentage of Lupus patients present inflammation of joints, or organs, Lupus is classified as an "Autoimmune" disease. Why then are we not being sent to and treated by Immunologists, who actually are better equipped to diagnose and treat Lupus? So very little "true" public awareness on Lupus has been made available. So little government support has been done for supporting research on Lupus. We plan to help change this. Lupus survivors need available clinics that treat only our often complicated disease, where we can receive treatment under one roof. Instead of going from doctor, to doctor as most of us have had to do, and still do. The "Outreach" of our origination is to reach-out to ALL person's men as well as women who suffer from Lupus and it's several spin off conditions' associated with it. Sjogrens, Fibromyalgia, Raynauds, etc, to help support, educate themselves and their families.
