Puerto Rico resident Wigna Cruz lived for a long time with painful and exhausting symptoms such as joint pain, fatigue and stiffness. It was years before her doctor diagnosed her with rheumatoid arthritis, and during this time it was common for her to be frustrated by misdiagnoses and home remedies that didn’t work. She felt scared and alone. It was difficult to find information, in Spanish, that explained what she could expect from her illness and how to manage it over time. After she was diagnosed, she gained trust with her rheumatologist and began to see results from treatment. Educating himself about her disease was vital in taking steps to begin treatment.
“I tell people that it is important to be well informed and get objective information,” said Ms. Cruz, part of the leading patients of CreakyJoints Español, an international digital community for millions of arthritis patients and caregivers seeking education, support , advocacy and patient care. “Although rheumatoid arthritis has no cure, it is treatable, but you have to be proactive. The more you know about your disease, the more control you have in making decisions with your doctor about your treatment.”
That’s why CreakyJoints® Español recently launched a new digital guide written specifically for people whose primary language is Spanish to educate them on living with rheumatoid arthritis. Available free of charge and optimized for mobile use, the digital guide activity center includes different learning modules, such as videos, quizzes and infographics, that will help people living with rheumatoid arthritis understand their treatment and management options and offer tips for working with your health care team.
This new guidance is necessary because according to Pew Hispanic Research, 71% of Hispanics obtain health information through their social networks, and 79% of them act on this information. But the general health information available to the Hispanic community online skews heavily toward information wrong dangerous which has led to low levels of diagnosis and a growing knowledge gap, according to the US Bureau of Labor Statistics.
“We started CreakyJoints Español nearly five years ago understanding that there is a significant lack of health resources for people whose primary language is not English,” said Daniel Hernandez, MD, Director of Medical Affairs and Hispanic Outreach, CreakyJoints and CreakyJoints Español. “Our website and social media platforms now include hundreds of articles on living with arthritis, updates on the latest arthritis research, and stories from our members managing their everyday symptoms. With this new digital guide, we will be able to measure the impact of our education and try to address the disparity that affects our community, especially those newly diagnosed with rheumatoid arthritis.”
The CDC estimates that Hispanics are more than twice as likely to be disabled by arthritis and joint damage.
Ms. Cruz added: “I hope that those newly diagnosed take advantage of this new digital guide and then become active members of CreakyJoints Español to stay up to date with the latest information on the studies, the different treatments and all the information necessary to know how living with rheumatoid arthritis.”
The new digital guide is part of a larger program presented by CreakyJoints Español called
HOPE–CAPE, which focuses on cultural training for rheumatologists and education for the Hispanic rheumatoid arthritis patient. The program includes a patient council that meets weekly with CreakyJoints Español to review educational materials written in Spanish, discuss health disparities and barriers to care, and share ways to reach the Hispanic community. For more information on the digital guide, visit www.CJES.org.
“We are very impressed with our patient leaders who are actively contributing to positive changes in the way we provide education to people whose primary language is Spanish,” said Patient Advocate and Manager of GHLF’s Hispanic Community Outreach. “As the project evolves, we are able to better understand what is working and what is not when it comes to RA patient care and education, allowing us to adapt our materials and approach along the way. ”.
This project was supported, in part, by a grant from the Bristol Myers Squibb Foundation, whose mission is to promote health equity and improve health outcomes for populations disproportionately affected by serious illness.