Why aren’t we studying ankylosing spondylitis patients who are outliers?

“Would you mind doing a survey?” the doctor asked me. “We are doing some research into how and at what speed ankylosing spondylitis progresses in the average patient.”

As someone diagnosed with ankylosing spondylitis (AS), I understand the importance of increasing knowledge about this relatively rare disease. I happily agreed to take part in the survey. An administrative assistant kindly handed me a tablet with the survey questions:

1. When were you first diagnosed?
2. On a scale of 1-10, how would you describe your pain when initially diagnosed?
3. On a scale of 1-10, how would you describe your pain today?
4. Are you taking medication? (yes/no)

The end. No room was allotted for extra notes or comments.

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What about me?

I stared at the questions and realized I was unsure how to answer them. At the time of my diagnosis, my pain was awful. But when I was handed the survey, my disease activity was rare, even though I wasn’t taking any medications. I asked the administrator whether the survey took into account diet or lifestyle modifications. “I’m afraid there’s no way for us to keep track of people’s diet and lifestyle,” was the response.

Discouraged, I returned the tablet without answering the questions, explaining that, “While I would be happy to participate in studies about AS, I am afraid that my lack of symptoms these days would inaccurately represent the progress of people who follow recommended protocol.”

Someone unfamiliar with my story might wrongly conclude that I experienced a mysterious and miraculous remission after having terrible AS symptoms when I was diagnosed. This would be incorrect. Not only would such an interpretation of the survey be false, but it could also create false hope.

I am generally free of symptoms, but not because of a mysterious fluke. After much personal research into AS, I chose to adopt strict lifestyle modifications. A personalized diet and exercise routine have been wildly successful in managing my AS symptoms and, so far, have halted the disease’s progression.

Validating all experiences

My experience with the medical profession has generally been that my story is ignored and dismissed. I feel like I am just another case in a long line of patients coming through the clinic doors. This is not the fault of anyone in particular, as it appears to be a systemic failure.

In my opinion, there is nothing wrong with medicating to control and manage AS. However, it can be terribly discouraging when this is generally the only viable option given to patients with the disease. Sadly, it leaves many people searching for answers and solutions on their own, sometimes taking risks out of sheer desperation.

While significant time, effort, and funds are spent studying ankylosing spondylitis, disease outliers feel ignored. Why is it that when it comes to accomplished artists or athletes, we study the outliers? Great effort and resources are spent on studying what makes these outliers so successful. Yet, when it comes to rare diseases, those who don’t follow treatment norms risk being the recipients of eye rolls.

Along with countless others, I am an outlier because I have experienced success with a protocol that differs from the one promoted by the medical community. Their protocol is well-meaning and well-researched, but there’s always more to discover, and disease treatment is rarely one-size-fits-all. Instead of inspiring curiosity among health professionals, I feel as though I am treated like a threat to the system because I don’t fit the mold. I am dismissed.

My hope, as a patient of this relatively rare disease, is to have more funds go toward studying the successful outliers of ankylosing spondylitis. I have a gut feeling that a healthy microbiome is key to the success of these outliers. It is for me, anyway.

Thanks for reading! You can read more about my story here, as well as browse starch-free recipes and other people’s success stories, particularly those who manage AS with diet and lifestyle modifications. Also, join me on Instagram and Facebook for the latest updates and recipes!

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, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.