A Question of Gender
Scrolling down the Asthma.net homepage today, I noted articles from Dia, Kat and myself - three women living with asthma. While we are fortunate to have the perspectives of a couple men on the site—John and Leon—there are far fewer men involved in the asthma conversation than women.
The asthma gender gap
The research tells us part of the reason why this might be, which I will discuss—that boys are more likely than girls to have asthma in childhood, and then, the numbers flip-flop at puberty, when the opposite becomes true (and seems to get truer and truer as individuals get older). This has essentially become “common knowledge” in the asthma world, with boys 16 and younger being at double the risk of developing asthma.1
It is likely that this shift is associated with hormones and hormonal changes in women, as girls often have asthma onset around or just following puberty, or around menopause, but still, there is a lot we don’t know about asthma—this, I believe, is simply one of those things (and may be key to helping us address certain causes of asthma or worsening asthma/asthma symptoms as research progresses).
The online gap
While we know that there are differences clearly related to the pathophysiology of asthma that are slanted towards gender, it is also true that online representation among male and female patients is a lot different. This is the focus of a surprising deal of research—a few selections: a 2008 study focused on the cancer community suggests 75% of those engaging in online patient communities are female2; a 2009 study on the psoriasis community notes women make up 60% of members—men and women are at equal risk for psoriasis.3,4
When I tried to “zoom in” for more research data on Google Scholar, however, using the same search term from 2012 to present, rather than “all time”, the studies for the same term, but based on the last 5 years, yielded significantly less relevant data. I presume that this is not because any fewer patients are using online support communities, but rather, the following:
Research focus has changed
Health research has recognized that people are using online communities for chronic disease related social support, and have some approximate demographics, and are now focusing on things that may be clinically applicable: what resources are being sought (social support, information/education, etc), perceived value of online social support, and what impact these things have on patient outcomes—and in turn—clinical practice.
How patients access support has changed
I began my first proper blog, focused on asthma, in 2008. I was on the tail end of the dying era of message boards (although many such websites still exist—perhaps with a population of a slightly older subset—or for the younger of us, been replaced by Reddit—r/asthma has existed since 2011, which I’d never looked at until NOW, mind you—so the timeframe fits) and the old school chat room. Over the 9 years I have been a part of the online community, the conversation has remained—to a degree—on blogs, but has massively shifted to take place on Twitter, Instagram, and in Facebook communities. Coincidence with Twitter’s March 2006 launch? I think not!
Of course, given that no population-based studies of asthma communities are available, unfortunately, I cannot provide a direct translation that we can apply to our cluster of the patient population.
Finding online communities for asthma
The asthma community, as I have lamented before, is very small. We had a tight-knit little North American blog community back in 2008-2011-ish, where we occasionally had “blog parties” in each other’s comment threads (we’re talking 2010 or so), but by little I mean eight of us in the US and Canada at our peak (3 men, 5 women, which fluctuated on occasion up or down a woman or two, and up/down just one guy). There are still asthma blogs out there, of course, but an even smaller cluster, and I presume not as tight!
Really, I think it is just evidence of that shift: that people are using other forms of social media to access social support—and with Facebook being behind closed or secret groups, and Twitter being a more difficult to place to gauge demographics and the nature of information being shared, it changes which data we are able to attain about how people access online social support, and what the gender balance is.
The latest data from the CDC reports that 6.5% of males and 9% of females have asthma: 10.1% of boys under 18 have asthma, compared to 7% of girls.—after age 18, 9.7% of women and just 5.4% of men are reported to have asthma.5 So, where are they? That’s 5889 (in thousand) men in America alone, slightly less than half the number of women in America who have asthma.5
Look, I made you a graph, if you like that kind of thing5:
[caption id="attachment_7235" align="alignnone" width="600"] Data from the Centres for Disease Control and Prevention [CDC][/caption]You know what this means? It means 1 in 20 dudes has asthma. YOU GUYS ARE OUT THERE. While we may have a lower proportion of males living with asthma, we still need your voices, your stories, your experiences—online or offline.
Have you ever gotten "moon face" as a side effect of prednisone?