FOR IMMEDIATE RELEASE
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CreakyJoints Members Lead Pandemic Programming to Benefit the Arthritis Community
UPPER NYACK, NY (November 3, 2021) – Four CreakyJoints members will describe their COVID-19 risk as immune-compromised people, and how they cope with its mental health effects, at the American College of Rheumatology’s Patient Perspectives Program, held concurrently at 2021 American College of Rheumatology Convergence (November 3-9, 2021).
“More than 1 million people a month visit CreakyJoints.org, the digital arthritis patient community of the Global Healthy Living Foundation (GHLF), and we’re proud that the American College of Rheumatology chose our members to present their mental health coping strategies,” said Seth Ginsberg, co-founder and president of GHLF who was diagnosed with arthritis at 13.
Using Evidence-Based Information
Given the rapidly changing information about COVID-I9, CreakyJoints member Aberdeen Allen reports in his poster, “Should I Get the COVID-19 Vaccine With My RA? Using Evidence-Based Resources for Decision-Making,” how he made the decision to get vaccinated. Mr. Allen decided in favor of it despite his anxiety and hesitation about the vaccine, and after consulting evidenced-based information presented via educational webinars, articles, and a weekly newsletter that were part of the COVID-19 Patient Support Program offered by the Global Healthy Living Foundation.
Similarly, Wigna Cruz regularly referenced CreakyJoints Español articles and social media channels (in Spanish) to access up-to-date information on the pandemic as well as education on how to maintain her rheumatoid arthritis. In her poster titled, “How Online Spanish-Language Resources Got Me and My RA Through the COVID-19 Pandemic,” she said, “Interacting with online articles from CreakyJoints Español, and the support I received from other CreakyJoints Español members, made me feel less anxious and more comfortable using the internet. This was especially true in the beginning of the COVID-19 pandemic when I was getting contradictory information from news outlets and on social media. Luckily, the information I received through CreakyJoints Español was factual and helped me make decisions about my healthcare, including RA treatment decisions, with my doctor. It made me feel less anxious and gave me confidence to get outside and walk regularly.”
Research and Cooking Recognized
Diagnosed with rheumatoid arthritis (RA) as a teenager, CreakyJoints member Guadalupe Torres will discuss how her work and disease journey converged in her oral presentation, “Fighting for the Care We Deserve: My Experience as a Latina Patient-Researcher During the COVID-19 Pandemic.” Ms. Torres describes how she started her disease journey feeling ill-informed about what to expect, compounded by barriers to care related to the difficulties communicating with her physician about her thoughts on her treatment plan versus the treatment plan being set up for her. As she completed her college education and transitioned to adult rheumatologic care, she felt ready to better engage in understanding and managing her RA. During the pandemic, she was invited to work as a patient-researcher on a GHLF qualitative research project about people’s experiences living with rheumatic conditions during the COVID-19 pandemic; the project was specifically seeking patients from underrepresented communities to participate. She reports that collaborating in this research increased her health knowledge and helped her to build connections with other rheumatology patients, and better manage her mental health during the pandemic.
Having lived with RA since she was 19, CreakyJoints member Chantelle Marcial has managed her condition for decades. Noting that “people with chronic disease often go through a trial-and-error process to figure out what foods help them feel good,” Ms. Marcial suggested to CreakyJoints that the organization start a program during the pandemic called CreakyKitchen as a fun way to build a sense of community, share cooking tips and tricks with other patients, and to introduce people to new recipes that are easy, healthy, and delicious. Occurring monthly, Ms. Marcial has hosted eight episodes (to date) with attendance growing each time.
“Being able to connect with members of my CreakyKitchen community has been a huge boost for my mental health. Also, I spend time each month researching healthier recipes to share, which has made an impact on my own meals at home. I have started re-thinking and changing my own go-to recipes and finding ways to alter them to keep the flavors as good as they were, but with a healthier twist. In doing so, I have already shed a few pounds, which is a great relief for my back, knees, and ankles,” said Ms. Marcial. “CreakyKitchen gives me a fun, interactive monthly event to look forward to, which has been especially important during the COVID-19 pandemic.”
Ms. Marcial will give an oral presentation of “CreakyKitchen: How the Online Cooking Show I Started is Building Community and Encouraging Better Food Choices for Me and Others Living with Rheumatic and Chronic Disease.”
“Being able to share patient perspectives with the professional rheumatology community, other patients, and the general public brings to life the real, lived experience of managing serious and lifelong rheumatologic conditions,” said Shilpa Venkatachalam, PhD, Associated Director of Research, ArthritisPower co-principal investigator, CreakyJoints. “These reported experiences highlight why patient-centered research – both qualitative and quantitative – is vital to developing new disease management protocols, therapies, and medicines that reflect the evolving needs of patient communities.”
All Studies Presented by CreakyJoints at the 2021 ACR Convergence
Patient Perspectives Program:
- Changes in Patient-Reported Outcome Scores During the COVID-19 Pandemic: Data from the ArthritisPower Research Registry (POSTER, Tue. 11/9, 8:30-10:30 a.m. ET)
- Impact of the COVID-19 Pandemic on the Quality of Life of Patients with Rheumatic Conditions: A Qualitative Analysis of Perceived Risk and Decision Making (POSTER, Tue. 11/9, 8:30-10:30 a.m. ET)
- Trends in Medication Interruptions and Associations with Disease Flares During a Public Health Crisis: Longitudinal Data from Patients With Autoimmune Rheumatic Diseases During the COVID-19 Pandemic (POSTER, Tue. 11/9, 8:30-10:30 a.m. ET)
- Perceptions about COVID-19 Vaccination Among Patients with Rheumatic Diseases Enrolled in a National Patient Registry (POSTER, Tue. 11/9, 8:30-10:30 a.m. ET)
- Changes in Telemedicine for Rheumatologic Care during the COVID-19 Pandemic: Patient Perceptions and Preferences (POSTER, Tue. 11/9, 8:30-10:30 a.m. ET)
- Impact of Treatment Experience on Patient Preferences and Disease Burden in Psoriatic Arthritis: Results From a Rheumatology Patient Research Registry (POSTER, Mon. 11/8, 8:30-10:30 a.m. ET)
- Rheumatologists’ and Patients’ Mental Models for Treatment of RA Explain Low Rates of Treat-to-Target (POSTER, Sun. 11/7, 8:30-10:30 a.m. ET)
- Understanding Heterogeneity in Patients’ Conceptualization of Treatment for Rheumatoid Arthritis: A Cluster Analysis (POSTER, Sun. 11/7, 8:30-10:30 a.m. ET)
- Racial and Ethnic Distribution of Rheumatic Diseases in Health Systems of the National Patient-Centered Clinical Research Network (POSTER, Mon. 11/8, 8:30-10:30 a.m. ET)
Created by CreakyJoints®, ArthritisPower® is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions, as well as arthritis and rheumatological manifestations of gastrointestinal-tract (GI) conditions. With tens of thousands of consented arthritis patients, the free ArthritisPower mobile and desktop application allows patients to track their disease and participate in voluntary research studies in a secure and accessible manner. Results from ArthritisPower studies are frequently published in peer-reviewed journals and presented at medical meetings in the United States and around the world. ArthritisPower Patient Governors serve as gatekeepers for researchers who seek to access registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit ArthritisPower.org.
CreakyJoints® is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites, and the 50-State Network, which includes more than 1,600 trained volunteer patient, caregiver, and health care activists.
Part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints publishes the popular “Raising the Voice of Patients” series, which offers downloadable patient-centered educational and navigational tools for managing chronic illness. It 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. All programming is free, always. For more information and to become a member, visit CreakyJoints.org.
Find us online:
CreakyJoints Español: creakyjoints.org.es
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