Blog: National Partnership for Action
Eliminating Disparities in Lupus
Posted on 5/23/2012 by Sheryl McCalla, Esq.
During May, we recognize Lupus Awareness Month by celebrating the determination of those who live with this often debilitating disease and the persistence of the Sherlock Holmes' of medicine that diagnose and treat lupus patients.
The American College of Rheumatology's Lupus Initiative develops multimedia educational resources to help front-line providers and soon-to-be providers better diagnose lupus, particularly in women of color. Simply put, the Initiative strives to eliminate health disparities in lupus care and, ultimately, to ensure that all people lead equally healthy lives.
Lupus is systemic and chronic. Patients often experience difficulty completing the simplest tasks – brushing hair, using a fork, buttoning clothes, getting out of bed. Yet, despite its life-changing effects, lupus is too often misdiagnosed or undiagnosed because it manifests differently in different patients, has symptoms that fluctuate within the same patient, and is sometimes experienced by patients in generalized, unmeasurable ways such as "not feeling up to par" or "feeling fatigued."
In recent years, however, lupus patients and support organizations have succeeded in increasing funding for lupus research and education, spreading the word about the seriousness of lupus, and highlighting the striking disparities associated with it. Moreover, these lupus advocates have inspired discussion in the healthcare community about patients as whole beings who exist in the context of families, culture and community.
The Lupus Initiative supports these efforts by translating relevant findings from varied disciplines into user-friendly language and tools that providers, students, patients and others can use to medically address this hard to identify disease, and to consider each aspect of patient care as it relates to the whole.
Rheumatologists, and the health professionals that work with them, often treat patients that are difficult to diagnose and many of these providers have lent their expertise and time to The Lupus Initiative. Their ability to gather information from conversations with patients as well as lab reports; to communicate about quality of life issues as well as clinical observation; and to design treatment plans that take into account family support systems, cultural beliefs, and comfort as well as medical science, is invaluable.
So during this month of lupus awareness, we salute the patients and providers that have advanced lupus care and that have supported The Lupus Initiative as it strives to do the same.
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About the Blog
The Federal NPA Team writes about their thoughts on pressing issues, news and events concerning NPA. Follow and participate in this candid discussion.
About the Author
Sheryl McCalla, Esq. serves as Associate Director of the American College of Rheumatology's Lupus Initiative. Ms. McCalla's career includes service as advisory and legal counsel to medical institutions and physicians, and experience creating non-profit programs focused on increasing cultural, racial and gender diversity and sensitivity, and awareness of disparities.
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