NY1.com—New York—May 23, 2012
Tracy Pulla and Christopher Cedeno, now teenagers, were diagnosed with lupus in grade school.
Both say they wouldn't have had the confidence to handle their illness if it wasn't for the Charla de Lupus program formed by Hospital for Special Surgery.
"My biggest challenge would have to be accepting lupus," said Pulla, 19. "At such a young age, you don't want to deal with lupus. You want to ride a bike, go do what you normally do, play in the snow. With me it affected my circulation so I really wasn't able to go out and play in the snow."
"When I was diagnosed with lupus, when the doc told me it was pretty weird," said Cedeno, 16. "At first I didn't know what it was. My grandma was diagnosed with lupus and she actually passed away from it so that really affected me and my mother then."
Lupus is an autoimmune disease where no two cases are alike. Doctors still don't know why it occurs or how to prevent it.
What they do know is that that blacks, Hispanics, and Asians are far more likely to develop the illness than any other group. "Charla de Lupus," Spanish for "Lupus Chat," was created in direct response.
"We like to meet patients where they are," said Jillian Rose, the program manager at Hospital for Special Surgery. "We went into Washington Heights. We went into East Harlem where we know there is a large population of Latinos and African Americans so we trained culturally appropriate peers and staff to go out an provide support and education on the ground."
In addition to peer support, the program is also meant to serve as a pipeline for improved access to care. Not only are more patients of color diagnosed with lupus, but they are more likely to experience serious complications or even die as a result.
The program can include financial assistance, improved access to clinical trials, new medications and treatment regimens. Since its inception nearly two decades ago, volunteers have worked with more than 30,000 patients.
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