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.

I have about a million and one thoughts flowing around in my brain, so bear with me!

What I lack in size, I hope I make up for in passion.

Maybe that kid was right–maybe I’m “too tiny to be twenty”. Sometimes I don’t feel twenty–I convince the kids of it daily, but sometimes I have a hard time convincing myself that I could possibly have a quarter of my life behind me already. Sometimes I think I should have more figured out. And sometimes I just feel small, whether that’s in a good way or a not so good way.

I just hope that I’m already making an impact for somebody out there that helps them grow.

I taught a grade eleven biology class about asthma today. It went well, but as always I forgot to say a few things I intended to. I’ve done this presentation several times and I tend to change it up at least a little every time based on what I’m feeling in regard to asthma and life. Today, to increase tangibility for NON-asthmatics I had a good section on exercise management beyond asthma and exercise. However, sometimes high schoolers are like talking to brick walls–I don’t blame em, I was (and am) totally not a speaking in class person. Overall, I hope the three students with asthma are maybe thinking a little differently about health management and asthma, and the 25 others are a little more aware of what people with asthma deal with. That said, it was their last day of classes before winter break, so some sluggishness was expected! As always, I’m hoping to keep improving this lecture and my OWN knowledge of asthma, physical activity and how it affects the adolescents I’m speaking to.

Speaking of holidays . . . Whoa, nutrition out the window. I have not been doing great in that regard since exams started up, but I have totally fallen off the track! Because at first it becomes “I’ll get back on track after exams” and turns to “Well, its the holidays! I can get back on after!”

Wrong mindset, brain. I had declared on Sunday after not only McDonalds but also Pancake House that I would reclaim some ground on nutrition over the week. That turned into pizza yesterday with Evan while Christmas shopping and pizza today with Dean; tacked on to all the chocolatey goodness that has been served up at work by my coworkers and our families AND the lovely chocolate “hedgehogs” that I received as a gift after teaching grade eleven biology this morning AND the bits of lovely deliciousness my mom keeps baking.
It also morphed into basically no exercise since Sunday. Granted, Sunday included both hockey AND the gym, freaking fabulous; and I suppose that hitting up three malls yesterday in five hours may count for a little . . . but I don’t think so!

To once again quote Jay in his seemingly infinite and entertaining wisdom, “Why are the holidays any different? Because the table’s longer and there are more people at it?”. Yeah, true story.

Not to mention that this has been going on since Sunday. And you know when “the holidays” start? Saturday. At the earliest. That is a week of pre-holiday slackery. Even if the holidays should be no different, which I fully agree with, starting the nutritional/fitness downslide when I was working at getting back on track is no bueno.

Tomorrow: I own you for fueling better. That is my choice, regardless of what deliciousness people give me.
Saturday, I own you for a pre-Christmas dinner workout.
Sunday is fair game for whatever happens and not to think too hard about it.
Monday, boxing day shopping is a sporting event; resume regular programming, and rock this.

I got this.

Returning to old schools makes me very aware of the impending future. Today, I headed over to my old high school after work (right next door), an hour before I needed to be there to speak. I dropped my stuff off in the very dark room and made my way through the halls looking for familiar faces and to repeatedly answer the same questions for teachers, people who have played huge roles in helping me to learn and grow into who I am . . . “What are you doing now?” and “What are you planning to do?”

Two and a half years ago I was sitting in those desks. University seemed so far off, the career part of the future even farther. Two and a half years ago I thought I knew who I was; in reality I was as confused as ever. Two and a half years ago I was one of those students contemplating the big world outside those walls.

It makes me see what I’ve gained. But it also makes me wonder what I will have gained in two and a half years from now. I left high school and thought I had a plan. Then my plan changed. My plan still changes minute to minute; other than “probably still in school” I have no idea where I’ll be in two and a half years from now . . . Less idea than I thought I had two and a half years ago.

That scariness is part of the journey. I’d be lying if I said I didn’t thrive on it; I’d be lying if I said it wasn’t scary. But every single day I get closer to that answer. Every single day I know more. Every single day, things happen in a way that affect how I see the world and how I make choices. Every single day, I change as the world changes.

Every single day brings me closer to that answer.

And I wouldn’t trade this crazy journey for anything.

There are even more GOOD THINGS to come.