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Stories for Reprint
Lupus Chat
By Erin Willis, MARRTC Staff
The Charla de Lupus (Lupus Chat)® Program, at the Hospital for Special Surgery in New York, offers people with lupus and their families peer health education and support. It is a national program available in English and Spanish; bringing services to the underserved Latino and African-American communities.
The program has been bringing people with lupus together every month for the past seven years. Coordinators say teens and young adults with lupus often feel isolated and alone because of their illness. The meetings, which are offered at Morgan Stanley Children's Hospital of New York-Presbyterian, are meant to give them the opportunity to meet and support each other through informal discussions, special activities and celebrations. The group also encourages the participation of close friends and family members, which coordinators say helps newcomers feel comfortable, and acknowledges the impact of the disease on the whole family.
The program's coordinators say their goals are to educate, empower and enhance the quality of life for people with lupus and their family members. Charla de Lupus (Lupus Chat) Teen and Parent Group is one of the five components of the program.
"Families and teenagers really want to connect," says Jillian Rose, supervisor of the LupusLine and Charla de Lupus (Lupus Chat) programs. "They want to share life experiences and know someone else is going through the same things."
The Lupus Foundation of America estimates that more than 1.5 million Americans have lupus, including many teenagers. For these young people, coping with noticeable side effects such as joint and muscle pain, skin rashes, hair loss and mouth ulcers, can often be challenging.
Rose says the program acts as a support group for both parents and teenagers living with lupus; providing them with a safe environment to discuss important issues related to the disease, such as medication side effects, sex, or feelings of depression.
Lupus is an autoimmune disease, caused by the body's immune system mistakenly attacking its own tissues and organs. Lupus is a chronic inflammatory condition that can affect one or more organs, including the skin, blood, joints, heart, lungs and kidneys.
"Our first program, SLE Lupus Workshop, was spawned out of women sitting in waiting rooms for their rheumatology appointment and informally sharing information and experiences with lupus," says Rose. "The women asked for workshops and later, an opportunity to talk with each other over the phone especially when someone would have to miss the group because of a lupus flare."
LupusLine was founded and initially used mostly by older Caucasian women to talk about their disease over the phone. However, research shows that lupus is more prevalent in woman of color. It affects four times as many African American women and three times as many Latino women when compared to Caucasian women.
"We wanted to tap into this population," says Rose. "From our experience we knew that African American and Latina women in our programs had trouble following up with appointments and challenges with education adherence. We were also aware of the need to better educate this population about their illness as well as take into account some of the cultural beliefs that often dictate how they care for themselves after they leave the doctor's office."
Rose also says the program allows both parents and teenagers to connect over the disease, and some teenagers even bring their friends so symptoms can be better understood. "We build relationships with families and teens, but also with doctors and community resources; we build trust," she explains. "Then, we help connect patients with services they might need Ð Medicaid, Supplemental Security Income, or the SLE Foundation. We are not only educating this population, but we are also very much a part of their lives."
Pediatric rheumatologists from Columbia University asked their medical residents and interns to attend Lupus Chat and evaluate their experience.
"When doctors come into a session, they are simply there as observers in the process," says Rose. "They want to hear the families' concerns, like how practical treatment plans are or their adherence to the plan."
Of the 27 medical residents and interns that participated in Lupus Chat, more than half found the experience contributed to their understanding of the disease.
"We do a lot of formal activities like having lectures about medications, or ÔWhat is Lupus?' or living with lupus," says Rose. "We are very savvy and try to educate our patients as to what's out there. I think the real learning happens when you see that the person next to you has lupus."
The medical residents and interns also reported that the Lupus Chat made them aware of the teenager's emotional well being as well as the impact this chronic disease has on the teens and their families.
"All of our programs are based on really understanding the emotional and mental impact of the illness," says Rose. "Lupus is so complex. When one member of the family gets lupus, the whole family kind of does, too"
Adhering to medications, body image, pain, problems with insurance, or other family situations are often key issues that people with lupus face. "The emotional and mental issues are linked directly with how well you do Ð if you are taking your medicines, keeping appointments, or are able to pay for doctor visits, dealing with depression," says Rose. "It all has some effect on the disease."
By observing Lupus Chat, medical residents and interns were able to witness how important peer support is to teenagers and families dealing with lupus.
"Right now, we don't have the resources to expand Lupus Chat," says Rose. "But in order to compensate, we have a toll-free line, you can call any time.
"Parents are willing to talk to parents. Teenagers are willing to talk to teenagers. Our peer health educators are there to facilitate these conversations. We want to aid these teenagers' transition successfully into adulthood with this complex chronic illness."
For more information on Lupus Chat, visit www.hss.edu/CharladeLupus.asp or call the toll-free hot line at (866) 812-4494.
"Health care providers, health educators and patients should all be involved when dealing with a multi-dimensional illness, like lupus," says Rose. "Everyone needs to sit at the table and be in on making a treatment plan. Being there for follow-up, education, support, and referral of community services all has implications on the patient's adherence to a treatment plan."
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