Podcast: Listen below or Download (57 min, 55mb)
As former president of the Lupus Foundation of America, founder and president of the American Autoimmune Related Diseases Association (AARDA), and having multiple autoimmune diseases herself, Virginia Ladd has a unique perspective on the issues facing people with autoimmune disorders.
Since 1991, AARDA has been raising awareness about autoimmunity, working to get autoimmune diseases recognized as a disease category, supporting funding and research in the underlying mechanisms of autoimmunity, and advocating for autoimmune patients.
In this episode we talk about some of the barriers both to increasing medical research on autoimmunity and to creating diagnostic centers that would decrease the amount of time it takes people to get a diagnosis. We cover areas of research that show promise, and how awareness of autoimmune conditions has increased, even though recent studies show that 80% of the population still cannot name a single autoimmune disorder.
Virginia shares the passion behind AARDA and a few of the things she’s learned about taking care of her health through her own experience and hearing the stories of other people affected by autoimmunity.
What Virginia and I talk about
- How and why Virginia started the American Autoimmune Related Diseases Association (AARDA)
- Why autoimmune diseases should be considered a disease category (and why they aren’t already)
- Why there is disagreement about the number of recognized autoimmune diseases
- Why there is disagreement about the number of people who have autoimmune diseases
- The discrepancy in funding between autoimmune research and other disease categories and the likelihood of that changing
- The cost of autoimmune diseases—financially and personally
- Why the chances of being able to see an “autoimmunologist” anytime soon are slim
- The four “P’s” of treating autoimmunity
- The impact of single-disease loyalty on overall autoimmune efforts (and why the National Coalition of Autoimmune Patient Groups is so important)
- How Virginia manages her own health while running a national organization
“All day long we get calls from people sometimes from around the world, who are desperate to find out what’s the matter. They will do anything. They tell us ‘We’ll go anywhere,’ and we have to say we wish we could send you somewhere but we can’t.”
“There are multiple sides to this story of why there’s a need for a whole body approach to autoimmune disease.”
“Sometimes the best thing you can do emotionally to help yourself is to help somebody else. I’ve found that to be very healing.”
“Still more people think [autoimmune disease] is AIDS than can actually name an autoimmune disease.”
Virginia Ladd is President and Executive Director of the American Autoimmune Related Diseases Association, an organization that she founded in order to bring a national focus to autoimmunity and increase collaboration in research, education, awareness, and advocacy programs.
Virginia has been instrumental in the formation of the International Alliance of Patient Groups (IAPO), which is dedicated to advocacy for patient centered health care, and is a member of its board of directors. She was responsible for the formation of the National Coalition of Autoimmune Patient Groups, is a member of the National Institute of Health’s Autoimmune Research Coordinating Committee, and she recently organized a Congressional Briefing on the NIH Autoimmune Disease Research Plan.
Find Virginia and AARDA Online
Lupus Foundation of America: http://www.lupus.org/
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