Navigating AxSpa Research and New Discoveries
Did you know that researchers discovered the connection between HLA-B27 and AxSpa in the early 70s? And that biologics were introduced in the late 90s and early 2000s? I didn’t. I regularly check the Spondylitis Association of America’s page on latest news and research because I’m curious what we’re learning about the disease, and especially, if there are any new treatments my husband with AxSpa can try.
It had me wondering—what do we know about AS and what questions are still being researched and how can patients navigate new discoveries?
What we know about AxSpa is fairly recent
AxSpa isn’t a newly discovered disease. I’ve found in my research that there are skeletons from before the medieval times that show signs of fusion, but for the most part, our understanding of the disease wasn’t truly shaped until the 1970s. Until the invention of X-rays, diagnosis was difficult for patients. Then, with the discovery of the human genome unlocked the potential to finding a genetic cause.1
There are still big questions to answer
The biggest question out there I’ve seen in research about AxSpa is what causes the disease. There’s no certain cause right now—genetics can play a role through the HLA-B27 gene, but people still develop AxSpa without it.
Other questions I see are around how to personalize a patient’s treatment options, especially given the number of side effects and additional affects of AxSpa on the body. For instance, Keegan’s hips went through severe osteoarthritis as a result and at 28 he had both hips replaced. I’m curious to read more about how to manage all the aspects of AxSpa.
Why I keep up with research on AxSpa
When Keegan was first diagnosed with AxSpa, I assumed there would be a clear path with treatment. After all, many diseases had one. But as I dove into the web, I found that much was still so unknown, uncertain, and ambiguous. It took me months to understand fully what was happening in his body to prepare for his first rheumatology appointment. Once I realized that biologics are only roughly 30 years old in the treatment of AxSpa, I realized I needed to understand what researchers are finding so Keegan could make the best decisions for himself.1
Nowadays, I’m curious about what new treatments are being developed for AxSpa, both in terms of homeopathic and traditional medicine. I also am reading any news that comes out around genetics and causes of the disease, as it hopefully provides queues to keep an eye on my children’s possible indicators for the disease and explore new treatments.
Also, it makes me feel empowered and part of the care team when doing research. There’s very little to control in a chronic disease, so being able to get the latest and greatest gives me more confidence that there are researchers and clinicians also hoping for answers, just like me.
Where to find the latest research
Although I’ve attempted to dive into medical journals, it’s difficult to understand and derive meaning from the data. After all, I’m not a trained clinician nor familiar enough with the jargon to be able to read the papers. Instead, I look to other sources that publish articles summarizing takeaways frequently. These include:
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