Head on over to my friend Olivia’s blog to check out my guest post/interview from this weekend, where I share a bit about my asthma story and perspective on asthma, what I do with the Asthma Society of Canada/National Asthma Patient Alliance and the Canadian Severe Asthma Network, and living positively with asthma.

Olive lives with asthma and is involved with Asthma UK and shares her stories through her blog, as well as on Instagram. Thanks for having me share my thoughts, Olive!

In August/September, I ventured from Winnipeg to Minneapolis to San Francisco, to the East Bay, to Santa Cruz and Davis, California . . . to simply start the journey that lead me to the campus of Stanford University. I already wrote about the people—so, here are more of the good things. . . and a chance to meet the people and hear their voices and stories, and how technology and social media, engaged patients and engaged providers are changing the realities of medicine, and more importantly, improving patient care outcomes.

Disclosure: Stanford University, Stanford Medicine and Stanford Anesthesia, as well as their partners (including the Kadry Foundation, Eli Lilly, and Boeringher Ingelheim) covered part of my costs to attend Stanford Medicine-X, including part of my airfare, one night of hotel, and a significant portion of my conference fees. As a recipient of an ePatient Scholarship in the Engagement/Producer track, I was required to produce a blog post, video, etc. to share the stories of Medicine X—but, let’s face it, I would have done so anyways :].

I was really excited tonight when my friends at the Asthma Society of Canada shared an article entitled Six research developments in asthma via Healio. I think it’s important for patients to know what’s going on in research, and hopefully, the more people see what’s going on, the more people feel the desire to volunteer as participants in asthma research studies (like the Severe Asthma Research Program) or clinical trials that they are eligible to participate in.

The disappointing reality, though, is these “research developments” really contain little new knowledge. Some of these facts have been circulating around for a few years if you’ve been paying attention—and others, well, while I have a larger knowledge base on asthma than the average person with asthma [and, admittedly, some medical professionals], I am not a medical professional or researcher, and . . . I could have concluded the same thing, just less scientifically. Some others, well, point six for example? I knew from the title I wouldn’t understand, so I am admitting defeat on that right now.

Note that while I’ve linked a lot of studies here, I tried to keep my explanations basic [because, that’s the only way I actually understand].

 

1. “Asthma inversely linked to lung cancer.” Allegedly, the more atopic diseases one has, the lower risk that they’ll develop lung cancer—asthma was the least protective compared to eczema [middle-ground] and hay fever [most protective benefit—I actually want to put “benefit” in quotes.] So the finding that perhaps there is a [weak?] correlation between the inflammatory/allergic disease process and cancer is interesting, but, is it something that I can apply to improve my own outcomes? Nope, not really.

2. “E-cigarettes may worsen asthma, respiratory disease among youth. You’re joking, right? Inhaling a nicotine based chemical vapour might cause asthma symptoms? “Among youth” is also the key phrase here—for only the reason that it should be “among people”. I react to chemicals–from perfume or cologne, to body lotions, to Lysol—with exposure, never mind with purposefully inhaling stuff.

3. “Asthma relapse more likely after use of short-acting beta-2 agonists.” A beta-2 agonist is just the fancy term for a bronchodilator [a medicine that widens narrowed airways]; short acting ones [SABAs] are the common rescue inhalers that work within a few minutes and last for 4-6 hours. In more detail, the study reports that if SABAs are used prior to going to the hospital, relapse—or what some hardcore asthmatics would call rebounding—is more likely to occur. I actually need to quote this one out here because it’s so ridiculous:

Children who took short-acting beta-2 agonists within 6 hours before hospital admission and the presence of retractions on physical examinations increased their risk for relapse after the treatment for asthma exacerbations, according to data.

Obviously the best line is “according to data” (which you can find here—the full text, however, costs $30 despite that I am on my university’s database network—so, I, possibly like the authors of this article, won’t be digging any deeper). Given the line about SABA use, clearly this is useless data: if a person has an inhaler accessible, why would they not be using it? That’s what it’s for.
We get a bit smarter when we note the “presence of retractions” (decreased ability of the lungs to move air causes the muscles attached to the ribs—allowing the space around the lungs to become larger or smaller [more here on respiratory mechanics]–start working overtime, pulling inward to compensate for respiratory distress. Like I said, I’m not a scientist… but, I’m pretty sure recovering respiratory distress pretty automatically qualifies you to rebound. That, or tapering from the high dose steroids they suggest as a positive measure in preventing relapses. The final point, providing a written plan, is clearly a good one, and if anything is being done to be useful, probably more psychosocial research should fill the gap for what medicine is having trouble providing.

4. “Antibiotic use in first year of life associated with asthma by age 3.” I was diagnosed with asthma in April 2008. Like any sixteen-year-old, I read Wikipedia. Know what Wikipedia told me six years ago? That I had a higher chance of developing asthma because I was a) given antibiotics early in life, b) born premature, c) born by caesarean section. Wikipedia revealed this to me in 2008. Nope, I wasn’t diagnosed when I was three [or seven] but obviously, this is hardly new. If you’re already tired of my links and didn’t click through, that first abstract above [Droste et al.] is from 2000.

5. “Vitamin D3 treatment did not significantly affect asthma patients with low vitamin D levels.” This one is a newer area of exploration [but certainly not as new as 2014…], and to its credit [in my books, at least], its potentially tangible to patients. Initially, studies suggested that vitamin D might alter immune response to some degree (2007 article here for those smarter than me). While the article cited by Healio bases its notation on a single study, a meta-analysis and systematic review of the literature (Zhang, Gong & Liu, 2014) note that among 10 studies, while asthmatics were more likely to have vitamin D deficiency than control subjects [non-asthmatics], their vitamin D levels didn’t alter their asthma symptoms. Thus, what I take from this, is I can continue to avoid the outdoors as much as I want. [Kidding :).]

6. Hardcore science. The sixth point is far too complicated for me to even begin to discuss, so you smart people who understood that 2007 article up there on vitamin D, can please feel welcome to report back to us about elevated urinary diclorophenol and asthma morbidity. Because, like I said, not a scientist, and that is clearly not applicable to my life.

 

Research is research, and I’m happy it’s being done—but, I am here now. The above findings are not affecting my daily reality, and I’m not sure they’re getting us any closer to doing so.

While a few legitimately new asthma drugs have hit the market recently (primarily biologics like Xolair) I—and most asthma patients—are either using medications developed 30 or 40 years ago, or variations of medications developed in that timespan The medicine every asthmatic should have access to, most commonly known as Ventolin (salbutamol/albuterol in the US), was developed in 1968. Yet, here I am, forty-six years later, still taking this same bronchodilator medication because the alternatives aren’t available, and even if they were, aren’t really proven to be any more effective (Xopenex, to name one, is not available in Canada—levosalbutamol/levalbuterol is alleged to have fewer cardiac side effects, but… at a much higher price, thus, its much more rarely prescribed). Next up as the most-common asthma medicine type? Inhaled steroids—initially developed in, you guessed it, the 1960s.  We’ve had a few more advances in terms of, say, long-acting bronchodilators, but salmeterol (Advair/Seretide/Serevent)—and less dramatically, formoterol (Symbicort/Dulera/Zenhale/Foradil) carry a black box warning of increased risk of asthma related death.  Know what else causes asthma related death? Asthma.

Knowing that my risk of lung cancer is reduced is great, but maybe that’s not so much a “protective effect” but a biased finding as asthmatics [especially lesser-controlled ones] are often asked if we smoke by medical people—thus increasing our chances of smoking cessation intervention if perhaps we do smoke.

It doesn’t change that right now, today, I’ve used four different inhalers to stay feeling decent. Nope, not normal, not magically controlled… but decent. It doesn’t change that I’ve tried most available asthma medications and while the ones I am on now are the best fit for me so far, I still don’t know when that next thing that could be my “wonder drug” could come along—or if it ever will. We still barely know what causes this disease—other than it’s probably a combination of environment and genetics—so how can we even consider having the ability to find an actual cure for this disease? I honestly don’t think we can—and, here’s where my optimism severely drops: I very much doubt we will in my lifetime.

I just hope that next time I see a top six in research developments, that instead of telling me nothing that changes my daily life, that maybe we know what causes this disease and that it’s become preventable. That maybe they’ve developed an accessible system to phenotype asthma (nod to researchers like Dr. Sally Wenzel working on this right now!) and from that, can throw—hopefully new, and not just newly reformulated—medicine at me that will be guaranteed to work.

And even, most simply, that the psychosocial, emotional, and developmental aspects of the disease are addressed and that this knowledge is applied everywhere possible: to promote better patient and community education that’s developmentally and culturally appropriate for every community; to provide better patient-to-patient support—in a way that’s implementable and sustainable; and to ensure people understand their asthma and understand how to self-advocate.

The science is cool, or at least on its way to being cool—the science will eventually be awesome—but even when new ways to manage—or even cure—asthma arise, I know that if I’m still around that I probably won’t be able to trust the process fully if I don’t have a community of people sharing my story, sharing in similar circumstances, alongside me in whatever that undiscovered path might look like to be adjusting alongside me, too.

May is Asthma Awareness Month–and this coming Tuesday is World Asthma Day.  After spending a couple days together in the SF Bay Area last week, Steve and I got our networks to send out some questions, and did a very unstructured Q&A videocast to hopefully get some light shed on asthma, our thoughts, and hopefully teach some people a few new things about this disease.

To wrap up Asthma Awareness Month, I thought it would be interesting to vlog a day with asthma to give an idea of what things can be like. Though I’ve been sharing guest posts from my friends with asthma, they capture the big picture but not the finer details of the day to day intricacies of living with a chronic disease.

Asthma, though, can look immensely different from day to day and from person to person. I am extremely thankful for the willingness of some of my friends to rise up and join me in sharing what a day in their lives with asthma looks like (and, on very short notice)–and of course, if anybody else wants to contribute, by all means, please fire a video off to me!

Super special thanks to Steve for getting a video off to me on really short notice!

Steve and I filmed these in an overlapping block of time, so we really had no idea what the other person was doing. However, our perspectives really overlap in certain parts of these videos, which just blew my mind. Steve has really severe asthma, but if you know any part of his story, you’ll know that he truly rolls with it, does what he has to, and lives a really vibrant and active life regardless of his asthma.

However, despite “asthma” sharing a common name, and Steve and I having common passions . . . you will see that Steve’s day is dramatically different from mine.

(By the way, I’m convinced Steve is a pro video blogger in disguise. And I think he needs to do this more often. Also, Steve, I like your hoodie.)

Asthma: it’s a six letter catch-all.

It can have a host of symptoms from coughing, to shortness of breath, to wheezing, to chest tightness.

It can be asymptomatic, or relatively mild, or severe enough to require treatment in the intensive care unit.

It can be treated with inhalers and nebs, pills and injections.

It can affect somebody for two minutes a year, or twenty four hours a day.

It can be anything but simple, and there is no such thing as typical.

But most importantly . . .

It can be owned,

it can be lived with

. . . and it can be thrived with.