The only national hospital-based support and education program that is culturally tailored to lupus populations, Hospital for Special Surgery's Charla de Lupus program provides peer support and education to people coping with lupus and their families.
Charla de Lupus was honored in the HAVE category of “Community Outreach and/or Collaboration Programs,” and program representatives will receive the award at an AHA ceremony in Washington, D.C., on May 7.
Program services are offered at no cost to people with lupus, a potentially devastating autoimmune disease that disproportionately affects Latina, African American and Asian women. Trained volunteers who have the illness themselves provide peer support and education in English and Spanish to clients in traditionally underserved communities.
“Hospital for Special Surgery is nationally recognized for leadership and excellence in the fields of orthopedics and rheumatology,” explained Louis A. Shapiro, chief executive officer of Hospital for Special Surgery. “Charla de Lupus represents our commitment to serve the community and underscores the role of volunteerism in bringing our successful hospital-based program to people with lupus, no matter where they are. We are honored to receive the HAVE award.”
The multifaceted program includes a toll free helpline that screens and matches callers with a peer volunteer for ongoing telephone support. The phone line averages 1,800 calls each year. Most of the callers are from the New York region and throughout the United States, but the service has also received calls from Puerto Rico, the Dominican Republic, Ecuador and Colombia. For the most part, international callers find out about the service from the Internet.
The program also offers monthly education and support groups for lupus patients and their families in English and Spanish. In addition, volunteers from the Hospital for Special Surgery program go to lupus clinics at other hospitals to provide assistance.
“Charla deploys volunteers who understand lupus first-hand to empower children, teens and adults to cope with the impact of the illness and to help them feel less alone,” said Ms. Rose. “We’ve also published an award-winning booklet geared toward teenagers with lupus in English, Spanish and Chinese, and we’ve distributed more than 10,000 booklets to patients and rheumatology clinics nationwide.”
Lupus can be a devastating illness affecting multiple organ systems. The disease is unpredictable and characterized by “flares,” so someone who was fine one day can wake up the next morning in terrible pain and not have the energy to get out of bed. Lupus can attack the heart, kidneys, skin, joints and brain, and some people take 10 to 12 medications a day. “We’ve seen patients who needed a hip replacement in their 20s or 30s,” Ms. Rose said. “In fact, one of our volunteers recently came in, still recuperating from a revision hip replacement, to see how she could start helping again in the program.”
Because lupus is such a difficult illness, depression is common among patients. “That’s one reason why support and understanding from others who have lupus is so critical,” Ms. Rose said. “Sometimes it’s a tough job and we cry a lot. But we also laugh a lot, and it’s rewarding when we can help people and make a difference in their lives.”
Marielin Lopez was diagnosed with lupus 15 years ago at age 19 while a college freshman. The Manhattan resident has volunteered in the program for the past five years and will be accepting the HAVE award on behalf of Hospital for Special Surgery. Ms. Lopez says at the time she was diagnosed, she and her parents did not have much information. When doctors told them it was a chronic illness, they thought that meant she was going to die. “I got very depressed. When I was first diagnosed, I didn’t know of any support groups in the area, I felt very isolated and wanted to be alone. I put myself in a bubble. At one point, I stopped taking my medication and became bedridden until my aunt managed to snap me out of it.”
During the time she has volunteered, Ms. Lopez says she has gotten back as much as she has given. “Whenever I volunteered, whether I was feeling great or not, I loved that I could make a difference in other peoples’ lives. Sometimes you get caught up in not feeling well, but when you volunteer you find something that takes you out of your own world and your pain seems to go away.”
Lupus can go into remission, and Ms. Lopez is now doing well. She has a full-time job she enjoys and plans to get married in the fall.
Charla de Lupus volunteers receive a six-week, 20-hour, culturally relevant training program which includes the development of listening skills; learning about lupus diagnosis, treatment and doctor-patient communication; and opportunities to share personal experiences and information about essential resources. Since the program’s inception in 1994, 50 volunteers have contributed approximately 20,000 hours of service, with more than 30,000 client contacts to date. Anyone who would like more information about Charla de Lupus is invited to visit: http://www.hss.edu/CharladeLupus
About the HAVE programThe HAVE program is designed to acknowledge the value of volunteerism to individual lives and institutions, according to the AHA. The program is designed to achieve four goals: to encourage exceptional service; to promote visibility and goodwill toward the hospital or health care system; to increase allegiance and collegiality among volunteers; and to promote collaboration among provider organizations and community service organizations as well as instruct volunteers on how to improve the quality of life in the community they serve.
About the American Hospital AssociationThe AHA is a not-for-profit association of health care provider organizations and individuals that are committed to the improvement of health in their communities. The AHA is the national advocate for its members, which includes more than 5,000 member hospitals, health care systems, networks, other providers of care and 38,000 individual members. Founded in 1898, the AHA provides education for health care leaders and is a source of information on health care issues and trends.
About Hospital for Special SurgeryFounded in 1863, Hospital for Special Surgery (HSS) is a world leader in orthopedics, rheumatology and rehabilitation. HSS is nationally ranked No. 1 in orthopedics, No. 2 in rheumatology, No. 19 in neurology, and No. 16 in geriatrics by U.S.News & World Report (2011-12), and is the first hospital in New York State to receive Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center three consecutive times. HSS has one of the lowest infection rates in the country. From 2007 to 2011, HSS has been a recipient of the HealthGrades Joint Replacement Excellence Award. HSS is a member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College and as such all Hospital for Special Surgery medical staff are faculty of Weill Cornell. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City and online at www.hss.edu.
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