Ms. Chávez says Hablemos de Lupus is the official “fountain of information” for her group. The information shared on Hablemos helps answer common questions, including the foremost: “Am I going to die from this soon?” The information shared focuses on better self-care, something that can take time for those newly diagnosed with lupus to understand.
Another user: Laura Athié of Puebla, Mexico, who was diagnosed with lupus in 2000 (although her symptoms started much earlier than that). Ms. Athié regularly interviews other people with lupus and has even had a tango-lupus therapy dance she created performed at a doctors’ meeting. Hablemos de Lupus has given Ms. Athié a place to meet others with lupus and share and learn new information.
Ms. Athié says Hablemos de Lupus can help answer questions many people have about lupus, such as what the disease is, complications, whether a woman with lupus can still get pregnant, information on sun exposure sensitivity and more. And, she says, the YouTube videos educate patients without scaring them.
Ms. Athié believes people are more willing to ask questions on Hablemos de Lupus than if they were in a large in-person setting. “There are no barriers on Hablemos de Lupus,” she says.
Future Expansion
Eventually, Hablemos de Lupus plans to tackle Portuguese so it can expand to Brazil. The investment required to expand there should remain low, because the group’s existing content is relevant for the audience. “In addition to the Portuguese translation of videos already posted in Hablemos de Lupus, we plan to create videos and other types of educational resources on topics … using input from Brazilian patients, providers and social communicators,” Dr. Drenkard says.
The group plans to build a website as well, says Dr. Drenkard. It will host educational material in Spanish and Portuguese.
It’s for You, Too
All rheumatologists with Spanish-speaking patients—including those in the U.S.—can lean on Hablemos’ social media channels. If a rheumatologist faces difficulty fully explaining how to self-manage the disease due to a language barrier, they can refer patients to Hablemos de Lupus. “Language barriers and health literacy are additional obstacles faced by U.S. providers, particularly those who serve socioeconomically disadvantaged Hispanic populations,” Dr. Drenkard says.
Vanessa Caceres is a medical writer in Bradenton, Fla.
ACR, Lupus Foundation Target at-Risk Women
A new online awareness campaign, called Be Fierce. Take Control., targets African American and Latino women aged 18–25, who are most at risk for developing lupus. Jointly created by the ACR and the Lupus Foundation of America (LFA), the campaign encourages women not to ignore possible symptoms of lupus, such as fatigue and joint pain. The campaign also addresses the importance of early diagnosis and treatment in helping reduce the disease’s long-term consequences.
