How to Stay Informed About Ankylosing Spondylitis

How to Stay Informed About Ankylosing Spondylitis

I’m a wellness writer and editor. Some of my work has appeared in publications including The New York TimesGood Housekeeping, and here at Ankylosing Spondylitis News — my favorite!

My last full-time gig was as editor of a wellness retailer’s blog. The brand wanted to be seen as a trustworthy authority on wellness, nutrition, and fitness, so we sourced information from industry experts, medical journals, and scientific studies.

As someone with ankylosing spondylitis (AS), it’s important to me that my readers know that they’re getting unbiased, objective information. So, I’m going to discuss why you need to find your own research on AS and I’ll share my tips for finding the information you need.

Don’t take everything your doctor says at face value

Your doctor is an educated and trained professional. However, I’ve found that when I go into a doctor’s office armed with knowledge and questions, I get better results.

Taking an active role in your health is vital. If your doctor says, for example, that you should try “xyz,” researching and learning about that medication can help you and your doctor to reach a decision together.

Before I was prescribed Humira (adalimumab), I researched the therapy ahead of my visit to the doctor’s office. I asked questions before starting to inject myself. Learning the risks of Humira helped me to figure out that I had shingles, despite my having few symptoms (gee, thanks, immunosuppressants). By keeping informed, I was able to access treatment for shingles faster; this was crucial because a delay in shingles treatment increases the risk of developing postherpetic neuralgia.

Read recent scientific studies

Ankylosing Spondylitis News has lots of fantastic, accurate information on the disease and reports on medical and scientific studies and trials. If you want to find additional scientific studies on AS, I recommend using the National Institutes of Health’s PubMed, comprised of “more than 29 million citations for biomedical literature from MEDLINE, life science journals, and online books.”

PubMed is a free resource maintained by the National Center for Biotechnology Information at the U.S. National Library of Medicine. This resource contains studies from science journals, not information from random Wikipedia pages or blogs that any “Joe Schmo” can write.

Using the website is simple: Type “ankylosing spondylitis” into the search bar, along with other keywords relating to your search. For example, if you’re looking for AS and cardiovascular risks, type in “ankylosing spondylitis cardio.” For links to depression, enter “ankylosing spondylitis mental health.” Browse results to find the most recent studies and reports.

Some of the results are abstracts — short summaries of studies, while others are reviews of results from several studies. Toward the end of most studies, you will find the “conclusions” or “results” section — I use the “find” function on my computer to identify this section. Results are summarized, which give you the gist of very long (and super wordy) studies.

I also keep my eye out for the “conflict of interests” section, which discloses whether a pharmaceutical company or another party was involved in the research.

Your AS experience will differ from others

You can read all of the health blogs, scientific studies, and support forum posts in the world, but aside from informing you of potential risks or effective medications, they can’t tell you about your own experience with AS, because it’s unique. Your diet, fitness and stress levels, environmental factors, and access to care will determine the outcome of your disease. It took me a while to learn that AS is not a one-size-fits-all disease.

Stay informed, alert, and active on your well-being journey. Good luck, friends!

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Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.

Lisa Marie Basile is a wellness editor and writer with work in The New York Times, Refinery 29, The Vitamin Shoppe, Good Housekeeping, and more. She is the author of the forthcoming book, Light Magic for Dark Times, a booked geared toward self-care strategies during times of crisis.
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Lisa Marie Basile is a wellness editor and writer with work in The New York Times, Refinery 29, The Vitamin Shoppe, Good Housekeeping, and more. She is the author of the forthcoming book, Light Magic for Dark Times, a booked geared toward self-care strategies during times of crisis.

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