CreakyJoints Releases Guide, Made by Patients, Reviewed by Rheumatologists
CreakyJoints has released a guide for people living with ankylosing spondylitis, the first to be developed by patients and reviewed by rheumatologists.
“A Patient’s Guide to Living with Ankylosing Spondylitis,” is available for download free of charge (by following the link) for patients and their caregivers.
The guideline was reviewed by David Borenstein, MD, Clinical Professor of Medicine at the Division of Rheumatology of the George Washington University Medical Center in Washington, D.C.
“Before I was diagnosed with ankylosing spondylitis (AS), I defined arthritis in a very limited way. But people living with AS experience specific symptoms, complications and prognosis,” Regan Reynolds, an AS patient and CreakyJoints volunteer advocate, said in a press release.
“After a long wait, an actual doctor’s appointment can go by very quickly. A huge amount of information may be exchanged. But afterwards, questions inevitably arise and it’s important that patients have a credible, comprehensive resource to turn to for information and answers,” said Seth Ginsberg, president and co-founder of CreakyJoints.
The guideline opens with a Patient Charter that shares the organization’s view “that patients should be at the center of the care with access to treatments that are not limited by external forces.”
Then, a patient or caregiver can learn about symptoms, diagnostic procedures, and what they can potentially expect from the disease course.
Treatments are covered in detail and include everything from medications to “holistic and complementary therapies” such as diet, physical therapies, or meditation. CreakyJoints states that all options are reviewed without bias, simply taking into account available evidence of their effectiveness.
“These patient guidelines will help the newly diagnosed and the experienced patient like me better understand our treatment and management options,” said Reynolds.
“The patient guidelines will help our community identify and bring our questions to our doctors and nurses and others, so that we can take a leadership role in determining our future care, which is important to me. I can’t control having AS, but I can take control of my treatment strategy.” Reynolds added.
CreakyJoints also has developed guidelines for patients with rheumatoid arthritis and psoriatic arthritis, and will continue to produce guides for people with related conditions. The organization also plans to release a family planning supplement for people with autoimmune diseases.
“There is a massive appetite on the part of the patients, their family, friends and the public, to understand these complex conditions. Thousands of patients have begun downloading these free resources, and we hope that thousands of voices are now raised with decision-makers,” Ginsberg concluded.