CreakyJoints Publishes First Ever Rheumatoid Arthritis Patient Guidelines in Spanish

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.

About CreakyJoints

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.

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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

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