Stat’s Eric Boodman looks at how Black women with ankylosing spondylitis have been ignored and overlooked by the medical profession. Long considered a disease of young white men—when I was diagnosed at 25, I had what was seen as a typical case—AS has since been proven to be just as prevalent in women, and not just a white illness either. “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 good news in the Pontiac is that there hasn’t been a single new case reported here since the 18th. The less good news is that our vaccination rates could be a bit better. The Outaouais in general lags behind Quebec: only 66.3 percent have received at least one dose as of yesterday. Compare that to 71 percent of the entire Quebec population, or 80 percent of those 12 and up (who can actually get vaccinated right now).
Here in the Pontiac, only five municipalities have vaccination rates greater than the regional rate of 66.3 percent: Île-du-Grand-Calumet, Bristol, Thorne, Clarendon and Otter Lake range from 72.1 percent to 69.4 percent. Two small municipalities—Chichester and Waltham—have rates under 50 percent. The larger municipalities are in the high fifties and low sixties: Fort-Coulonge is 59.5 percent, Shawville is at 61.6 percent, and Mansfield-et-Pontefract is at 66 percent. Pontiac-the-Municipality, which if you remember is not part of the Pontiac MRC, is at 60.9 percent. Gatineau, for comparison, is at 64.1 percent.
The COVID-19 situation in the Pontiac is much improved, with five or fewer active cases at the moment and no new cases reported anywhere since last Friday. The outbreak we were dealing with in April was more or less brought under control in May, though there was a bit of a rebound in the Bryson/
Since I posted two weeks ago that we weren’t doing that well out here COVID-wise, I thought I’d mention that things are now looking a bit better. We only had 14 new cases over the past week, compared to 51 new cases two weeks ago. Almost all of those new cases—11 out of 14—are in the Fort-Coulonge/Mansfield area, whose local outbreak may actually be showing signs of running out of steam. Shawville hasn’t had a new case in a week, Campbell’s Bay longer than that. The special emergency measures come to an end on the 17th, as they do for the rest of the Outaouais, at which point we’re back in the red zone.
Having spared us during the first wave—during which we were behind police checkpoints that turned back non-essential traffic—and being under relatively good control during the second, COVID-19 has just erupted in the Pontiac MRC during the third wave. In the space of one month the number of people who have tested positive has more than quadrupled, from 39 on March 25 to 173 today.1 This is mainly due to a major outbreak in the Fort-Coulonge area: Fort-Coulonge went from fewer than 5 cases2 to 34; Mansfield-et-Pontefract from 7 to 64. Together they make up more than half the cases in the Pontiac MRC while comprising only a quarter of the population.
These numbers may not seem like a lot—a total of 1.2 percent of the Pontiac MRC’s population has tested positive for COVID as of today, compared to Gatineau’s 3.2 percent or Quebec’s 4 percent, and with our small population (14,251 according to the 2016 census) the raw numbers are pretty small in comparison. But to reiterate: more than three-quarters of the our total COVID cases have come just in the past month. Cases are increasing by 30 percent a week—and 30 percent of this week’s numbers is a lot more than 30 percent of a month ago. This is how exponential growth works.
Meanwhile, last Friday the Pontiac Hospital—the front door of which is less than 300 metres from my home—reported an outbreak in its acute care ward: nine patients and three staff members tested positive initially; that number has since risen to 17 patients and 13 staff. For context, the ward has 34 beds. Fortunately some have been vaccinated, and some have tested positive without showing symptoms, so this may turn out to be the best possible version of the worst possible scenario. But still: the whole point of last year’s checkpoints was not only to keep COVID out of our community (which tends older and in poorer health than the Canadian average); it was to keep it out of our hospital.
So yeah. We could be doing better out here.
We’ve both installed the COVID Alert app, even though it’s not fully functional in our province (so far it’s just Ontario). We can’t report a COVID diagnosis, but we can get notified if someone from Ontario we’ve come into contact with does report a positive COVID test result. Since we live near the Ontario-Quebec border, and sometimes have to cross into Ontario for errands and such, there’s already some value in installing it.
It can’t run on older phones (on the Apple side, older than an iPhone 6S or first-gen SE) because of hardware limitations, I believe. It makes use of the Apple/Google API, which has strong privacy protections: the only things it shares with the server or with other phones are anonymous tokens. The privacy protections are such that Michael Geist is comfortable installing it, which is something.
It’s in that context that I have to look really sideways at a CBC article that suggests that some people could be identified by the COVID Alert app.
I imagine that everyone with a serious or chronic illness knows the date of their diagnosis. Mine was January 13, 1998, which is to say 22 years ago today.
The diagnosis was by that point a formality. I’d known something was up since June 1997—I was in constant pain and I had trouble walking and sleeping—and had been talking to doctors and undergoing tests. The previous month I’d received results from a bone scan that suggested a possible diagnosis of ankylosing spondylitis—a disease I’d never heard of before, though it turned out that there was a family history of it. The rheumatologist reviewed that family history, the symptoms and the test results and concluded that I had a “textbook case” of AS.
(As it turns out, my case is not so textbook, or at least the textbook has since changed. A 2012 MRI revealed no evidence of spinal fusion after 15 years, which made a different rheumatologist wonder whether I had AS at all. She retracted that doubt at a later visit when I arrived in flare and she saw how I walked. I suspect that what I have is non-radiographic axial spondyloarthritis, which is similar to AS and is treated the same way, but doesn’t involve spinal fusion and doesn’t show up on X-rays. I’ve yet to run my theory past a rheumatologist, though.)
I’ve been living with that diagnosis, with modifications, for more than 22 years. I’ve always been open about my illness (much to my mother’s horror) and I used to talk about it a fair bit—I even ran a blog about it for a while—but lately I’ve been talking about it a lot less. That’s not because I’m doing better, because honestly I’m not (though there still seems to be no sign of fusion). It’s because talking about my illness is, even after all the elapsed time and the care received, still a potentially hazardous activity. Even under best-case conditions, talking about my illness requires a tremendous amount of emotion work.