Raising the Voice of Patients: A Patient’s Guide to Living with Ankylosing Spondylitis
CreakyJoints is excited to announce a first-of-its-kind document, Raising the Voice of Patients: A Patient’s Guide to Living with Ankylosing Spondylitis.
With the help and guidance of our Patient Council (a group of patient leaders from across the country), we have published the first comprehensive document that helps all individuals during their journey with ankylosing spondylitis.
Download Your Free Copy
Please fill out the form below to download the inaugural AS patient guidelines for free.
About the Patient Guidelines
If you haven’t had a chance to see our Patient Charter, please take a look. It spells out really clearly, we think, what it means to us to be patient-focused, and it gets at the core of our mission.
There are, of course, many sets of recommendations designed to help medical professionals deliver the best care possible — including the American College of Rheumatology’s clinical practice guidelines. In those guidelines, the ACR offers guidance on “particular patterns of practice and not to dictate the care of a particular patient.” That’s an invaluable tool for doctors to use when they weigh different treatment options, but those guidelines are written for professional, rather than lay readers. For patients who haven’t graduated medical school, the language can be a challenge, to say the least.
In the guidelines, you’ll find in-depth yet accessible explanations of the following:
- Your symptoms and their causes
- Strategies for your treatment
- Therapies in addition to medicines that will be part of your treatment
- Tips for how to discuss your disease and its impact on your life with both family and friends and your insurance company
The authors of the guidelines know personally how difficult it can be to talk about living with ankylosing spondylitis, and they share tips based on what has worked, and not worked, for them.
One important note. These guidelines absolutely aren’t a replacement in any way for heeding the advice of your treating physician. You should never trust anyone or any document that purports to do that. We see this set of recommendations as a tool to help prepare you for your meetings with your physician. Think about it as a one stop shop for AS information, so you’re prepared to then dig deeper and better understand some very technical terms and concepts.
In the effort to help patients living with ankylosing spondylitis, several professionals overlap: doctors, surgeons, nurses, other medical professionals, insurers, legislators, and others. Everyone is committed to the same end goal, but that doesn’t always mean that everyone has the same seat at the table, or that patients have as much control of their destinies as they could. This handbook helps restore that balance.
A special thank you to our partners at Novartis for their generous sponsorship of this important patient resource.