Learn About HSS Programs that Promote Lupus Education and Support

Most people are unaware of how life-threatening lupus can be. It often manifests itself internally, preventing outsiders from understanding the pain, fatigue, stress, depression, and many other symptoms that are coupled with the illness. Since little is known about the illness throughout the communities it affects the most, lupus awareness and education is critical.

Some quick facts about lupus:

• Systemic Lupus Erythematosus (SLE) can vary from a mild condition to a life-threatening illness, which causes disease by attacking a person’s autoimmune system. It can inflame joints and attack kidneys, hearts, lungs and liver, leading to pain, dysfunction, and sometimes permanent damage to healthy tissues.

• Approximately one and a half to two million Americans suffer from this potentially fatal autoimmune disease, and 90% of those are women.

• Most women are stricken during their childbearing years.

• Most people develop their lupus between the ages of 15 and 45.

• Asians, African Americans and Latina women are 2-4 times more likely to have lupus than Caucasian women.

Hospital for Special Surgery offers a variety of free support and education programs for people with lupus:

LupusLine, a national telephone peer counseling service, links callers with trained volunteers who have lupus. Since its inception in 1988, LupusLine has helped more than 16,000 patients and their families. Call 866-375-1427 toll-free. Hospital for Special Surgery's LupusLine Program, made possible through funding by Rheuminations, Inc., reaches out to the communities we seek to serve in cooperation with the S.L.E. Lupus Foundation.

Charla de Lupus, a peer health education program, links callers with trained volunteers who are lupus veterans, with a particular emphasis on reaching Spanish-speaking communities. The program also offers monthly Teen and Parent Chat Groups in New York City. Call 866-812-4494 for assistance in English and Spanish. Charla de Lupus, offered by Hospital for Special Surgery, is made possible through funding by Rheuminations, Inc.

LANtern, a peer health education program that supports, empowers and enhances the quality of life of Asian Americans and their families with lupus, initially targeting the Chinese American community. Call 866-505-2253 for assistance in English, Cantonese and Mandarin. Hospital for Special Surgery's LANtern Program, made possible through funding by Rheuminations, Inc., reaches out to the communities we seek to serve in cooperation with S.L.E. Lupus Foundation, Inc., Charles B. Wang Community Health Center, Chinese Community Partnership for Health, NYU Downtown Hospital, Hospital for Joint Diseases, and the Center for the Study of Asian American Health at the NYU School of Medicine.

SLE Workshop, an informal forum held at Hospital for Special Surgery in which lectures by prominent lupus experts are followed by group discussion. Call 212-606-1033.

In addition, we are pleased to offer two award winning publications to those interested in the disease:

• For Inquiring Teens with Lupus: Our Thoughts, Issues & Concerns, a teen-focused educational booklet. Call 866-812-4494 toll-free for a copy.

• What Chinese-Americans and their Families Should Know About Lupus, a Bilingual English/Chinese culturally relevant informational booklet. Call 866-505-2253 toll-free for a copy.