CreakyJoints® Español Prioritizes Culturally Relevant Rheumatoid Arthritis (RA) Education with New Digital Guide

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CreakyJoints® Español Prioritizes Culturally Relevant Rheumatoid Arthritis (RA) Education with New Digital Guide

PUBLISHED 3/30/22
JESSICA DAITCH – GHLF STAFF

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FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

Optimized for Mobile, Multi-Module Format Offers Diverse, Engaging Ways to Educate About Living with RA

UPPER NYACK, NY (March 30, 2022) – CreakyJoints® Español, the international digital community for millions of arthritis patients and caregivers who seek education, support, advocacy, and patient-centered research, part of the non-profit Global Healthy Living Foundation, today launched a new digital guide written specifically for people whose primary language is Spanish to educate them about living with rheumatoid arthritis (RA). Optimized for mobile (and desktop) use, the digital guide’s activity center includes different learning modules, such as videos, quizzes, and infographics, that will help people living with RA understand their treatment and management options and offer tips for working with their health care provider team.

In addition to being a comprehensive education program, the digital guide is also stand-alone, IRB-approved research that will inform understanding of the best practices to educate people about living with RA. CreakyJoints Español tracks engagement and responses to the quizzes and other activities, and analyzes if this educational format improves understanding of RA.

“We started CreakyJoints Español nearly five years ago understanding that there is a significant lack of health resources for people whose primary language is something other than English,” said Daniel Hernandez, MD, Director of Medical Affairs and Hispanic Outreach at the Global Healthy Living Foundation. “Our website and social media platforms now include hundreds of articles about living with arthritis, updates on the latest arthritis research, and the stories of our members managing their day-to-day symptoms. With this new digital guide, we’ll be able to both measure the impact of our education and attempt to address the disparity that affects our community, especially those newly diagnosed with RA.”

It is estimated by the Centers for Disease Control and Prevention that Hispanics are more than twice as likely to become disabled from arthritis and experience joint damage.

Culturally Appropriate Education Prioritized

The new digital guide is part of a larger program introduced by CreakyJoints Español called Hispanic Outreach Program Effect–Culturally Appropriate Education (HOPE–CAPE), which focuses on cultural training for rheumatologists and education for the Hispanic RA patient. The program includes a patient-council that meets weekly with CreakyJoints Español staff to review educational materials written in Spanish, discuss health disparities and barriers to access care, and share ways to reach the Hispanic community.

“We’re so impressed by our patient ambassadors who are actively contributing to positive changes in how we deliver education to people whose primary language is Spanish,” said Angel Tapia, GHLF’s Patient Advocate and Hispanic Community Outreach Manager. “As the project evolves, we’re able to better understand what’s working and not working when it comes to RA patient care and education, which allows us to adapt our materials and approach along the way.”

According to Pew Hispanic Research, 71 percent of Hispanics obtain health information through their social networks, and 79 percent of them act on this information. But the general health information available for the Hispanic community online heavily leans toward dangerous misinformation, which has led to low levels of diagnosis and a growing knowledge gap, according to the U.S. Bureau of Labor Statistics.

Puerto Rico resident Wigna Cruz lived with painful and exhausting symptoms for years. It took years before her doctor diagnosed her with rheumatoid arthritis, but not before she became frustrated by misdiagnoses and home remedies that didn’t work. She felt scared and alone. After she was diagnosed and over time, she built trust with her rheumatologist and began to see results from treatment. Getting educated about her disease was vital to taking steps to start treatment.

“I tell people it’s important to be well-informed and get factual information,” said Ms. Cruz, a member of HOPE–CAPE patient council. “Even though RA does not have a cure, it is treatable, but you have to be proactive. The more you know about your condition, the more control you have in making decisions with your rheumatologist about your care. I hope the newly diagnosed will take advantage of this new digital guide and then become an active member of CreakyJoints Español to stay updated with the latest information about the studies, the different treatments and all the information necessary to know how to live with rheumatoid arthritis.”

To learn more about the digital guide, visit www.CJES.org.

CreakyJoints Español’s HOPE–CAPE project was made possible, in part, by a grant from the Bristol Myers Squibb Foundation, whose mission is to promote health equity and improve the health outcomes of populations disproportionately affected by serious diseases.

About CreakyJoints Español 

CreakyJoints® Español is an international digital community for millions of arthritis patients and caregivers who seek education, support, advocacy, and patient-centered research. Carefully curated and translated resources from CreakyJoints and content original to CreakyJoints Español targets the real-life experience of people with arthritis living in Spanish-speaking households and communities is available on our website and via our social media channels, including Instagram and WhatsApp.

Part of the Global Healthy Living Foundation, CreakyJoints Español also has a patient-reported outcomes research registry available in Spanish called ArthritisPower® (ArthritisPower.org.es), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational peer-reviewed research. CreakyJoints Español also hosts eRheum (eRheum.org.es), a platform providing telehealth and virtual-care support. All programming is free, always. For more information, visit CreakyJoints.org.es.

Encuéntrenos en las redes sociales:

CreakyJoints Español: CreakyJoints.org.es

CreakyJoints: CreakyJoints.org

CreakyJoints Australia: CreakyJoints.org.au

CreakyJoints Canada: CreakyJoints.ca

Global Healthy Living Foundation: ghlf.org

Facebook: facebook.com/CreakyJoints & facebook.com/GlobalHealthyLivingFoundation

Twitter: @GHLForg, @CreakyJoints, #CreakyChats

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp

TikTok: globalhealthylivingfnd

LinkedIn: linkedin.com/company/ghlf

About Global Healthy Living Foundation
The Global Healthy Living Foundation is a 501(c)(3) nonprofit organization whose mission is to improve the quality of life for people with chronic illnesses (such as arthritis, osteoporosis, migraine, psoriasis, inflammatory bowel disease, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness e!orts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the digital community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research through our ArthritisPower® (ArthritisPower.org) Research Registry. In response to the COVID-19 pandemic, GHLF started a Patient Support Program, informed by a patient council made up of people living with a wide range of chronic illnesses, that now serves more than 30,000 people. Via CreakyJoints, GHLF also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. Visit ghlf.org for more information.

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