UPPER NYACK, N.Y.--(BUSINESS WIRE)--CreakyJoints® today announced that their flagship publication, “Raising the Voice of the Patients: A Patient’s Guide to Living with Rheumatoid Arthritis,” is now available in Spanish. First published in 2017, these unique patient guidelines are the first ever to be developed by patients and reviewed by rheumatologists, specifically for use by rheumatoid arthritis (RA) patients and their caregivers. The Raising the Voice of Patients series is available for free download on the CreakyJoints website, and other volumes address osteoarthritis, psoriatic arthritis, ankylosing spondylitis, gout, and family planning for people living with arthritis in English. CreakyJoints also launched a dedicated Spanish-language version of their website to provide additional resources to the arthritis community. The website as well as the patient guidelines were reviewed by patients and physicians to ensure the content was accessible for all.
According to the U.S. Centers for Disease Control, there are 4.4 million Hispanics with doctor-diagnosed arthritis.1 Though prevalence of arthritis among Hispanics is less than non-Hispanic whites, Hispanic people are more than twice as likely to become disabled from arthritis and experience joint damage.2
“I lived with painful symptoms of RA (and other co-morbid autoimmune diseases) for nine years before getting accurately diagnosed. During that time, I tried a wide array of traditional, homeopathic, and complimentary therapies until I found a treatment plan that helped me achieve remission. There were days when I felt great, and other times I felt overwhelmingly tired or in pain,” says Maraliz Campos, a volunteer patient advocate on the CreakyJoints Latino/Latina Patient Council and a sonic meditation teaching artist and yoga instructor. “When a person with arthritis needs education and support, these patient guidelines will help them understand their disease better, and also explain its progression to family and friends.
“These patient guidelines, written for patients and by patients, help us raise our voices, it gives us a voice by providing us with information step-by-step that is easy to understand, so we can incorporate it into our lives without too much stress and effort. All people experience pain, but that shared experience can connect us to each other.”
Patients at the Center of Treatment
Following a declarative Patient Charter, which details the guiding principles that underscore the CreakyJoints perspective on arthritis education, support, advocacy and research, the patient guidelines explain how people with arthritis can speak to their rheumatologist or other health professionals about their treatment plan, how to ask questions of their insurance company regarding coverage, and best practices for meeting or communicating with local legislators to advocate for patient-friendly health care laws. The patient guidelines also describe the different RA medications as well as complimentary therapies with evidence-based citations.
“The diagnosis and day-to-day management of a chronic disease like rheumatoid arthritis can be overwhelming and confusing, particularly because we’re asking patients to make important choices about their disease management strategy, which usually includes a combination of medications, physical activity plans, and other complimentary approaches,” said Dr. Irene Blanco, MD, MS, rheumatologist and Rheumatology program director at Albert Einstein College of Medicine in New York. “These patient guidelines will serve as a resource to people with arthritis who are seeking comprehensive information about RA, including answering questions about insurance coverage. It can also help them to form the questions they have for their health care team in advance of their next appointment.”
“CreakyJoints strives to provide education to our entire community, including those who speak Spanish,” stated Seth Ginsberg, President and Co-Founder of CreakyJoints. “Our goal is to empower patients to ask questions about their disease journey, including treatment options, and inspire them to proactively communicate their preferences to their healthcare team.”
The patient guidelines were written by a dedicated panel that included patients, rheumatologists, and CreakyJoints’ staff writers. “Raising the Voice of the Patients: A Patient’s Guide to Living with Rheumatoid Arthritis” translation into Spanish was reviewed by Dr. Oscar Soto, rheumatologist and president of Fundación FER, a rheumatoid patient organization in Puerto Rico.
“Raising the Voice of the Patients: A Patient’s Guide to Living with Rheumatoid Arthritis” in Spanish is available for free download here.
CreakyJoints is a digital community and advocacy organization for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients through our popular social media channels, our website www.CreakyJoints.org, and the 50-State Network, which includes more than 1,500 trained volunteer patient advocates.
As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower with more than 18,500 consented arthritis patients who participate in longitudinal and observational research. CreakyJoints also publishes the popular series “Raising the Voice of Patients,” which are downloadable patient-centered navigational tools for managing chronic illness. For more information and to become a member (for free), visit www.CreakyJoints.org. To participate in our patient-centered research program, visit www.ArthritisPower.org.
1 Arthritis Related Statistics. U.S. Center for Disease Control and Prevention https://www.cdc.gov/arthritis/data_statistics/arthritis-related-stats.htm Accessed on 5/8/2018.
2 Song, J., Chang, HJ, Tirodkar, M. et. al. “Racial/ethnic differences in activities of daily living disability in older adults with arthritis: A longitudinal study” Arthritis & Rheumatism. First published: 30 July 2007 https://doi.org/10.1002/art.22906 https://onlinelibrary.wiley.com/doi/10.1002/art.22906 Accessed on 5/8/2018