Teens who have lupus often feel especially alone and isolated. It's hard to have a chronic disease. And it's hard to know what's worse - having a facial rash or having pain no one can see, so you look normal but are suffering. And if it's hard for healthy teens and parents to talk, think how much worse it is when you have lupus!
Charla de Lupus - the Spanish name for Lupus Chat - is a program that offers groups in which teens with lupus provide support and education to each other. In a separate room, their parents or caregivers provide the same to each other. Peer health educators are people who speak both Spanish and English and have lupus themselves. They help the participants share their experiences, introduce guest speakers, and help with recreational activities.
Do teens with lupus and their parents need a special place to find out about lupus - a place just for them to learn and talk? Are groups a good way to learn?
These groups were established at the Hospital for Special Surgery in 2001. At American College of Rheumatology scientific sessions, researchers reported on a study to determine how people in the groups benefited. Teens and their parents answered questions on a survey - either in the group or by mail. Answers were private.
The average age of the teens was 17. They had typically had lupus for more than 3 years. Nearly two-thirds had used 3 or more drugs for lupus since their diagnosis.
More than 90% of the teens and parents reported being very satisfied or satisfied with their group - and would recommend it to others. Why did they rate the meetings important?
Teens focused more on the time together with each other. Parents focused equally on all parts of the program.
Answering another question, "How much does lupus affect your life?", parents reported being much more affected than the teens.
In contrast, teens were more likely to say they did not have "enough family members in my life to talk with about lupus."
Both parents and teens strongly agreed that the groups helped them:
What does it all mean? If you are a teen - or the parent of a teen - with lupus, find out about a support group just for you.
If you're in the greater New York area, call 212-606-1958. Outside the New York area, call toll-free 866-812-4494. Being among friends can make a big difference.
Charla de Lupus, offered by Hospital for Special Surgery, is made possible through funding by Rheuminations, Inc.1. Doran WH, Horton R, Peterson MG, Moorthy LN, Paget SA, Flics S, Engelhard E. Evaluation of Charla de Lupus Teen and Parent "Chat" Groups: A Model for Providing Psychoeducational Support for Underserved Families. Arthritis Rheum. 2003 Sep;48(9):S420. Abstract 1045|