MAY 15, 2012 

AT A RESTAURANT NEAR YOU!

 Click HERE for details and an initial list of participating restaurants. 

It is estimated that 1.5 million Americans and 5 million people worldwide are affected by lupus. These estimates may not reflect the true prevalence (how many cases exist) and incidence (how many new cases occur each year) of this autoimmune disorder. Previous studies provided only a partial picture for a number of reasons. Because these diseases are characterized by low fatality and hospitalization rates, previous studies based upon death statistics and hospital records failed to capture a more accurate picture of the impact of lupus on populations. Compounding this challenge is the fact that lupus is difficult to diagnose, leading to the exclusion of undiagnosed patients from the estimated numbers.

In 2003, the U.S. Centers for Disease Control and Prevention funded two population-based lupus registries addressing many of these issues and using methods that relied on novel federal, state and local partnerships. These are the Georgia Lupus Registry and the Michigan Lupus Epidemiology and Surveillance Program. Both programs fit the funding criteria that included a population of more than 1 million and a relatively large African American proportion. Part of the strategy for the registry is to identify cases of lupus that were being treated in hospitals and by rheumatologists, nephrologists and dermatologists.

In last year's Annual Scientific Meeting of the American College of Rheumatology, data gathered from the Georgia Lupus Registry were presented showing that black women have a significantly higher incidence of systemic lupus than most reports in the scientific literature. Dr. S. Sam Lim of Emory University School of Medicine said that lupus continues to affect significant people across racial and ethnic lines, but with a disproportionate burden on black women.

Newer registries exist in California and New York City to provide estimates of lupus cases among Asians and Hispanics, and in the Indian Health Service for American Indians/Alaska Natives.

A basic epidemiologic understanding of lupus is necessary to understand the full clinical spectrum and population burden of this disease. We need more accurate numbers in order for informed decisions to be made - be it on the political arena (government funding), in the medical field (better diagnosis) or within the continuum of social services (like disability and patient advocacy).

Click HERE to learn more about the Lupus Registry.