Minority Women and Lupus

Women of color have higher incidence rates of the serious autoimmune disease lupus than their white counterparts. They also tend to have a more severe and aggressive form of the disease.

Minority Nurse Magazine—July 16, 2009

Outreach is a key factor in successfully treating lupus in minority demographics, especially given that the nature of the disease requires specific ongoing treatment and building a relationship with healthcare providers in order to keep symptoms at bay. But it isn’t always easy, acknowledges Eulalee A. Green, RN, a clinical nurse in rheumatology at Hospital for Special Surgery in New York, which offers culturally and linguistically competent lupus outreach programs for the minority communities it serves.

“Because there is no cure for lupus, patients must maintain visits with their physician, even if the disease is in remission,” says Greene. Many lupus patients may not want to come back for follow-up care because they have a sense of dread after they’re diagnosed: “It’s understandable that patients have fear about the disease. They may fear loss of friends, social life or even [loss of] employment.”

In these instances, it’s important for nurses to assist patients in finding support systems to help them cope. “Patients can find help through support groups in their community and through church organizations. Most of all, they should be counseled to reach out to their family or significant other,” Greene says.

Hospital for Special Surgery offers several options for support and counseling programs, including several that are targeted specifically towards minority and multicultural outreach:

• LupusLine©, 212.606.1952 / 866.375.1427, a national peer-counseling phone support program.
• Charla de Lupus (Lupus Chat)©, 212.606.1958 / 866.812.4494, a sister program to LupusLine, providing services in both English and Spanish.
• LANtern® (Lupus Asian Network), a patient support program providing services in Cantonese and Mandarin.