What Christi Taylor-Gentry remembers most about third grade are the times when the teaching stopped and she and her twin sister were sent out of the room. They were new at Lanier Elementary. Their parents were newly divorced, their mom living in a subdivision on the northwestern edge of Tulsa, Okla., with manmade ponds and curvy sidewalk-less streets.
It was the 1970s — two decades after Brown v. Board of Education, but Tulsa schools had only just been dragged toward desegregation. Taylor-Gentry’s parents chose Lanier, on the south side: A school in the white part of town, they figured, would have more to put into their kids’ education. Every morning, before the 20-minute drive, she and her sister would wake at 5, submit to their mom’s vociferous combing or get a light comb-clunk on the head.
They were the only Black students there. They made friends, became Blue Birds, wore the uniform of red vests over white shirts, with navy skirts and knee socks. That year, ‘Roots’ came out on ABC, and a classmate took to calling her Toby, the name the slave owner gives the main character in the miniseries. Every so often, a kid would use the N-word within earshot of a teacher, and the class would grind to a halt. There would be a Conversation, while Taylor-Gentry and her sister were sent to help out with the kindergartners, or get such-and-such from the teachers’ room, or go read in the library. She loved Mrs. Piggle-Wiggle, how Hubert who wouldn’t pick up his toys ended up barricaded in and had to receive dinner through his window, on the tines of a garden rake.
advertisement She came from a family of teachers — generations of them, and she became one, too, in Ohio, where she’d gone to college. But then, when she was about 40, joint pain started getting in the way. It had started with her knees and lower back in her 20s. Now, the throbbing in her elbow would wake her up in the wee hours, as if she’d somehow broken it in her sleep. Some days it was hard to move. One doctor dismissed it as a quirk of heredity. Another said fibromyalgia, and put her on meds that didn’t help. A psychiatrist told her she just had to push through: Just do it, like the Nike ad said. Eventually, she found herself in a rheumatologist’s office in Columbus, her joints being painfully pulled at and swiveled. After, as the doctor helped her down off the exam table, he said he was pretty sure this was ankylosing spondylitis. He wrote it down for her, so she could look it up. It was typically found in white men, he went on; he didn’t think there could be many more than 20 Black women in America who had it.
Taylor-Gentry was shocked. He was a good doctor — one of the best she’d seen: kind, thorough, probing issues others hadn’t taken seriously. But did she actually have this disease? When she looked it up, there was almost nothing about Black women in the scientific papers she found. Was she really such a rarity? It wasn’t a good feeling, this strange sense of being alone. There was something familiar about it, like walking into a room you recognize but can’t quite place.
advertisement A self-replicating hypothesis
Even for a ‘stereotypical’ patient, ankylosing spondylitis can take years to get diagnosed. If, like Taylor-Gentry, you’re seen as an anomaly, the delay can be even more extreme. For Wendy Covington, it took a decade. It started in her knees, as if some crucial piece were being wrenched out of place. She called her mom, who lives near her in North Carolina. ‘I said, ‘Can you please bring me the walker that Uncle Eddie’s mother-in-law was using? I need it. I can’t walk.” Uncle Eddie’s mother-in-law had been in her 90s; Covington was 28. In the hospital, the pain faded with steroids. But there was no diagnosis. When friends called, worried, asking what was wrong, she wasn’t sure what to say. ‘None of the doctors knew what this was,’ she said.
For Roz Tolliver, of Merced, Calif., it took 30 years. Her dad had had AS, his vertebrae totally fused. He couldn’t lift his chin away from his chest. He’d grown up a sharecropper, lied about his age to enlist in World War II ‘to get the hell out of Mississippi.’ He wasn’t one to complain. Only after his death, when she got her dad’s records from the VA, did she realize her many unexplained symptoms mirrored his. She told her doctors. ‘They just dismissed it,’ she said.
It took Wendy Covington a decade to receive an ankylosing spondylitis diagnosis. Jay HarrisonIt wasn’t the only thing they dismissed. There was the throbbing in her pelvic bone, which her pain management physician didn’t believe in until she happened to land in the ER for something else. By chance, a scan revealed an issue in the cartilage of her pubic arch. ‘I took it to my doctor, and I showed him; that’s when he looked at me, and he’s like, ‘Oh, wow, you do have pain there.’ It’s so insulting,’ she said. Same thing with her shoulder. ‘I just feel like as a Black woman, I am not taken seriously. Until the evidence is in front — this objective evidence — I am not to be believed.’
That pattern of dismissal is well-documented and widespread. But in ankylosing spondylitis, it’s uniquely ingrained. ‘When people were in medical school — even when I was in medical school — it was taught that this one specific disorder, it really happens in this particular patient population,’ said rheumatologist Alexis Ogdie, director of the University of Pennsylvania’s spondyloarthritis program. She got her M.D. in 2006. What was the snapshot her professors gave? ‘A white young man’s disease.’
AS sits in a kind of thorny tangle, where biological mystery, gender discrimination, sex differences, racism, and genetics meet. It’s hardly the only ‘white disease’ (a label pasted onto both cystic fibrosis and multiple sclerosis). Nor is it the only one where women run a greater risk of being misdiagnosed (look no farther than the humble heart attack). It probably isn’t alone in having the dubious distinction of being both: These forces, after all, lurk in seemingly every corner of medicine. What sets AS apart is the way patients have begun naming the misogyny and the misuse of race that’s shaped their illness, untangling how it came to be. Even as science shifts, they’ve seen, old clinical habits of mind remain, which can in turn affect the science. Classically, it was known as a disease of inflammation and excessive bone growth in the spine. Now, it’s understood to be part of a spectrum, one form of spondyloarthritis among many, symptoms sometimes overlapping, gut issues coinciding with knee issues, heel pain presaged by psoriatic rashes. When rheumatologists were demarcating AS, though, they created strict borders, a disease defined by how it looked in men. Its prevalence was also reported to vary. Rarer in Japanese people than in Chinese, the literature said; more common among Northern Europeans and certain Native American groups, very rare in those of sub-Saharan African descent. Unsurprisingly, the categories are often translated into race.
But race is an unreliable proxy for the complex interplay of genetic probabilities that might lie in someone’s family’s past. Take Dawn Gibson, a health writer and patient advocate living with AS outside Detroit. ‘I am what’s called part of the Loving Generation. My mother is white, my father is Black. They were allowed to marry because of the Supreme Court decision Loving v. Virginia,’ she said. Her father’s genome likely bore traces of white rape during slavery. She identifies as Black, and American society reads her as such. As she put it, ‘If you see me walking down the street, you would never know how much European ancestry I have.’ ‘He told me that he wasn’t going to look at anything any further than any of the other doctors, that there’s no way that anything else could be wrong with me.’ Minionette Wilson, AS patient and administrative assistant at Duke University School of Medicine Gibson sees it as a self-replicating hypothesis: AS is deemed rare in Black women, so doctors give it little weight as a possible diagnosis. It’s hard to include in research what hasn’t been diagnosed. The very fact of having to drag from doctor to doctor only makes the next one more suspicious. Minionette Wilson, of Graham, N.C., remembers one rheumatologist who said so explicitly. ‘He told me that he wasn’t going to look at anything any further than any of the other doctors, that there’s no way that anything else could be wrong with me. And he got up and walked out of the room,’ she recalled. ‘I just felt so crushed.’
Even in online patient groups, where you might share frustration, warn others away from certain clinicians — where researchers often go looking for participants — these women found their experiences questioned. When she’d started out as a health activist, around 2011, Gibson had wanted to get involved in the AS community. She soon backed off, to the more welcoming terrain of chronic pain and invisible disability. ‘It didn’t feel safe for me,’ she said. ‘The hostility from a lot of the other patients — this eagerness to have a white illness — was just so strong.’
It’s gotten better, and she’s gone back. Still, she was surprised in 2017 when a special education teacher in Columbus messaged her: She was starting an online group for Black women with AS — a one-stop shop, Taylor-Gentry liked to say, for researchers in search of volunteers. Maybe as a bloc, they could sway the narrative about their disease.
Dawn Gibson, a health writer and patient advocate living with AS, in her home in Royal Oak, Mich. Sylvia Jarrus for STATExcluded
Initially, it was a story written in bone. Anatomists found skeletons in the church yard or the charnel house showing calcified bridges between vertebrae. A 19th-century neurologist wrote of a back ‘made rigid as a stick’; a 1930s clinician coined the term ‘bamboo spine.’ Some have seen hints of it in natural history museums and Renaissance church crypts, in Egyptian mummies and members of the Medici family. One perhaps overzealous physician posthumously diagnosed a Cuban crocodile, a Canary Island monk seal, and a prehistoric German cave bear.
With more fine-grained tools for charting DNA, there emerged a fuzzy picture of what might be going on. The disease was found to be associated with a variant known as HLA-B27, in a gene that helps your immune system distinguish other from self. It provides the instructions for a molecule with a notch or groove — a kind of microscopic snag for the protein bits from bacteria and viruses. Once a foreign fragment is caught, it’s dragged to the surface of the cell, signaling for immune backup, sometimes marking the cell for culling, like a pink X spray-painted on a diseased tree.
AS seems to arise from a mistake in what gets snagged, the body reading some of its own protein bits as pathogens — specifically, those shed by the elastic cartilage where bone and stretchy tissue meet. It could be a case of molecular mimicry, attackers evolving ornaments that make them look like shards of ourselves. More often, experts hypothesize a misfolded protein, making the cell’s surface look abnormal and attracting the ire of the immune system. Either way, the result is inflammation that erodes cartilage, and sometimes bone. The missteps don’t necessarily stop there, though. As Walter Maksymowych, a University of Alberta rheumatologist explained, things can go awry with the construction crew responsible for the gradual regrowth of bone. ‘It’s over-exuberant,’ he said. That was a hallmark of severe AS: Bony spurs and bridges, ghostly white on an X-ray where there should have been the gray of softer tissue. Only over the last two decades, with the subtlety of MRI, did rheumatologists realize how many spondyloarthritis patients they’d been missing. The scans measured water in the body, revealing painful inflammation in joints where there hadn’t yet been visible changes in the bone.
‘When we were only looking at X-rays, there was a time when we thought the male-to-female ratio was 9 to 1. We now know it’s 1 to 1,’ said Maureen Dubreuil, a Boston University rheumatologist. Why the presentations differ isn’t clear: some murky entanglement of hormones present and genes expressed and environmental factors. What is clear is that these patterns overlap with social ones — namely, women’s experiences being disbelieved. Back pain’s a common complaint, with many possible triggers. MRIs are costly and often inaccessible. Orthopedists or chiropractors might not have auto-inflammatory diseases in mind, or might not associate them with patients who look a certain way. ‘It leads to women having undiagnosed back pain for decades, if not their entire lives,’ Dubreuil said.
Part of a doctor’s job is to make disease visible, to see an explanatory narrative in the impressionistic one a patient gives. Genes have come to play a role in that, too. Variants in over a hundred of them are associated with spondyloarthritis, but HLA-B27 is the most highly correlated, the most well-studied, the one doctors test for. It provides a clue, not a surefire diagnosis. Most patients do have the variant, but you can be HLA-B27 positive and not have the disease, just as you can have the disease and be negative for HLA-B27. In some physicians’ minds, though, the variant and the disease have become synonymous, erasing the subtleties: You don’t ‘have the gene,’ so it’s got to be something else. A smaller proportion of affected Black patients are thought to be positive — another potential hurdle in getting diagnosed.
Those genetics studies also revealed something else. The link with HLA-B27 first emerged in April 1973, in two papers published just weeks apart. The illness was already described as unusual in Black patients — and rarity became an excuse for exclusion. One study, from London, was looking at ‘undoubted, classical’ AS: Along with anyone who had gut or skin issues, the researchers wrote, ‘Non-Caucasians were excluded.’ The other came from Los Angeles. It mentioned testing Black patients, but their results were reported ‘in addition to this Caucasian series’ and not part of the statistical analysis — an afterthought. Even into the ’90s, some research elucidating this sort of association was explicitly limited to white participants. The assumption of separateness was embedded in the design.
A scan of the lumbosacral junction in a patient with ankylosing spondylitis. Wellcome ‘I wanted to be the majority’
Taylor-Gentry had grown up caught between worlds. There was the world of Lanier, where she wished she weren’t Black, where she wished she could be like everyone else, the girls arriving with their hair down and still wet. Then there was the world of her grandmother’s house, a hub for the lo
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