And I don’t just mean our bodies.
Recently, during a visit to the pharmacy, I noticed someone wearing the same compression gloves I was wearing.
“Hey, nice gloves!” I held up my hands to show mine.
She responded, “I have Raynaud’s.”
I said, “I have Ankylosing Spondylitis.”
…crickets. I might has well have just ripped off my clothes.
She looked as though I’d spoken another language. For a disease that is oh-so-NOT-rare, it sure feels like it in these instances. Not only is it a difficult pair of words to pronounce, people’s initial thoughts might revolve around names of dinosaurs – Ankylosaurus Spoondywhat?
It’s not all deer-in-the headlights, however.
Ankylosing Spondylitis (AS) has been in the news a lot lately. We’re getting somewhere, perhaps even reaching a more level playing field with some equally severe diseases that already receive plenty of media attention.
Dan Reynolds of Imagine Dragons publicly announced his struggles with AS in late 2015 during a show in London. When a video clip from his announcement reached my Twitter feed, I could sense the hope from other AS sufferers responding to him with thanks.
About a year later, Dan joined forces with Novartis and the Spondylitis Association of America (SAA) to kick off This AS Life Live, an interactive video series. Because of the partnership, media attention for Dan and for AS has grown. I even got the chance to have a conversation with Dan. It’s amazing the amount of attention a little-known disease can get when a not-so-little-known, brand-name celebrity comes out about having it. Dozens and dozens of articles and interviews later, ankylosing spondylitis is being repeated in the airwaves. Name recognition is growing.
I have been advocating for AS education and awareness since I was diagnosed in 2013, so everyone in my circle knows I have Ankylosing Spondylitis and can either pronounce it correctly or recognize it on a page. They know a little bit about the disease, too, because they’ve been paying attention to my Facebook posts, articles, videos, and media interviews. But in the past several months I have noticed a sudden increase in friends approaching me because they met someone who has AS, glad that they have the tools to connect one sufferer with another (and, no doubt, appreciative they’ve been paying attention to my story):
A church friend recently asked me to call someone whose daughter had been diagnosed. Another friend reached out on Facebook and asked to connect me with someone who was about to be diagnosed. My boss told me he met someone with AS while traveling. Someone in the support group I lead for people with Spondyloarthritis told me her neighbor has AS! And at a recent dermatology visit, the doctor interrupted my explanation of AS to tell me his wife has the disease.
People are coming out of the woodwork. Awareness and name recognition is growing, even if it still feels grassroots.
But are we at a tipping point for education? Advocacy? Treatment? Diagnosis? Research?
In some ways, yes. In many ways, no.
For example, we’ve come a long way with treating and understanding AS:
- Not even fifteen years ago, biologics (expensive, specialty drugs meant to slow the progression of the disease, administered by shot or intravenously) for AS were, in a way, experimental – the first one was approved for use for AS in 2003 (etanercept, or Enbrel). Now there are six biologics approved in the USA to treat AS, and even a few biosimilars.
- Only in the past several years have treatments begun to be customized for AS, rather than treating AS in the same way as Rheumatoid Arthritis (RA). Acknowledging the differences between these two similar “cousin” diseases is a big step.
- Opinions have changed in the past 50 years about exercise for AS patients. We now believe it is better to move, within reason, than stay still, and to maintain good posture so the spine will not fuse in a hunched position. This seems like common sense now, but I have read doctor notes from the 1970s advising my father to remain sedentary and to not fight the fragile spine’s forward curvature, lest he fracture it.
- It is now common to treat AS with a combination of many of the following (depending on the patient): steroids, NSAIDs, biologics, supplements, massage, acupuncture, medical marijuana, diet and exercise (what did I miss?). Not too long ago, anti-inflammatories, steroids, and “suck it up” were among the limited recommended options to treat the symptoms of AS.
- AS is now believed to affect men and women at more equal rates, where it was once believed to only affect men (one of the reasons I wasn’t diagnosed sooner).
- We have identified several genes that are commonly associated with AS (including HLA-B27), bringing us closer to identifying what causes the disease and who may be predisposed to it, although these genes are not present in all patients.
- We now specify that Ankylosing Spondylitis is an auto-inflammatory disease because it does not create the auto-antibodies that are present with autoimmune conditions.
But, even with these leaps and bounds:
- We can barely keep up with our own classification and naming system, which morphs every year or two as new research reveals different aspects of the disease: Ankylosing Spondylitis could be called or classified under any category(s) of Spondyloarthritis, Spondylitis, Axial Spondyloarthritis, Radiographic Axial Spondyloarthritis, and NonRadiographic Axial Spondyloarthritis. There are also some outdated and often stigmatizing names for AS: Tin Man Disease, Bechterew’s Disease, Bekhterev’s Disease, Marie-Strümpell Disease, and Bamboo Spine…
- AS is still difficult to diagnose; it takes many people a decade or more just to receive the diagnosis, and there is no one conclusive test that points to the diagnosis. For me, it took 13 years, and I even knew my father had the disease.
- People still don’t know what AS is, and patients with the disease are often stuck explaining what it is and proving they have it – much different than someone saying, “I have cancer,” and receiving an immediate reaction of compassion.
- Patients with AS usually see a rheumatologist, who treats dozens of diseases. There is no AS-specific specialist. So patients are often stuck doing a majority of their own research (even resorting to asking other AS patients in support groups for medical advice) and combating misinformation or outdated information. For example, there are still rheumatologists who believe women cannot get AS.
- There is no funding through the National Institutes of Health (NIH) specifically for AS research. Government-funded research for AS logically could come from the NIH budget for Arthritis ($222 million), but that is a relatively small pool of money for over 100 forms of arthritis (of which AS is just one). There are only *four types of arthritis that receive their own NIH funding – one is Rheumatoid Arthritis ($62 million), a disease that shares a lot of similarities to AS, but which affects fewer people than Spondyloarthritis (the category of diseases AS falls under). Such funding needs to be lobbied for to be implemented, then renewed annually with members of Congress.
- There is, obviously, no cure for this degenerative disease.
So, are we at a tipping point? Certainly we are closer than we used to be, but without more funding, and as long as people think “Dinosaur?” when they hear Ankylosing Spondylitis, we still have a long way to go before becoming less extinct.
*Edit on April 16, 2017: an earlier version of this article stated that Rheumatoid Arthritis was the only type of arthritis to receive its own NIH funding. This is incorrect – Crohn’s disease, Lupus, Osteoarthritis, and Rheumatoid Arthritis all receive funding through the NIH.