I was very fortunate to come across Kerri a fellow asthmatic but across the pond in Canada!! Kerri inspired me to write my blog about living with asthma, the pros and cons!! Kerri also coined the phrase “badassmatic” which I love. It is such a good word as we kick asthmas butt!!! Kerri has taught me so much about asthma and acting as an advocate even though I have probably had asthma for 20 years more than she has, her knowledge is second to none.
As such an active member of many asthma forums and The Asthma Society of Canada I thought what a great opportunity to ask Kerri some questions to show how asthma, asthma treatment and research differs from here in the UK. So I hand over to Kerri a “badassmatic”.
1) How long have you had asthma and how did you get diagnosed with asthma?
Diagnosis was a bit convoluted! In February 2008, I developed new-onset chest tightness following a choir performance. I think I had some coughing come about soon after, too. When nothing had resolved a few days later (you know, being sixteen and perceiving myself as invincible I didn’t get too concerned!) I visited a walk in clinic and was prescribed antibiotics. They did nothing and I basically just lived with it for another month and went to a different walk in clinic (my pediatrician had retired, my mom and I learned!) and had the same result after a lot more thorough of an assessment. On April 28, 2008 I went back to the second clinic and was told I “might have mild asthma” and prescribed a few Ventolin inhalers. I spent the next six months using those up to four times a day, until I found a primary care doctor. I started Flovent on October 31, 2008. My diagnosis has since been confirmed by a methacholine challenge, and I take 3 different maintenance inhalers–I probably fall more into the moderate category based on this and my meth challenge results (maybe severe depending on who you ask/what criteria are used).
2) How did you feel when you got diagnosed with asthma and has this had a big impact on your life??
Well, I think these are two different questions (I’ll elaborate more on this one within question 3, too)! When I was diagnosed, I think I was just relieved that after all those months I could start breathing better! I didn’t know what an arduous journey I was up against. Of course, for the first six or eight months of poor control, I was frustrated and really has little idea what to do. At this point I reached out to the (small) online asthma community and started blogging my experiences. Through this, I met people who encouraged me to continue learning about my asthma and then, through their example, I became empowered to engage in more physical activity–I was always the slow, uncoordinated kid who hated physical education class, and this was a choice I had to make myself to get engaged with. It turned out at this point (last term of grade 12), I wanted to drop my first period law class. I filled it with dance of all things–that was my turning point where my sweet teacher, the awesome Mary Page, both challenged what I thought I was capable of (see: uncoordinated with movement anomalies and unpredictable lungs!) while encouraging me to pay attention to my body. This I think has shaped a lot of how I interact with my world now: challenge what I perceive is possible while knowing what my body can handle on a given day (…of course, I’m not perfect, and sometimes I’m inactive on good breathing days and push it too hard when I’m already short of breath! It’s a balancing act!).
3) Many people look at chronic diseases such as asthma with such negativity but has having asthma brought any positives to your life or changed the way you view your life??
Honestly, I think that I wouldn’t be living the the (awesome) life I live in the way I live it now if it weren’t for asthma! Yes, it looks different than how I’d anticipated, maybe, but I’ve had a bunch of really cool experiences that I wouldn’t have had without being a younger person with asthma and being vocal about my experiences with this disease. Interestingly, too, my asthma also helped steer me towards studying kinesiology [the science of movement, fitness and health, including not only how the body responds to activity, but also the effects of physical activity and exercise on the brain, mental wellbeing, and social aspects of sport and physical activity—and more!], because of the role being physically active began to take in my life following my diagnosis (and persisting in getting my asthma under better control). I’ve also been called out [not in a bad way!] for my persistent positivity, even pre-asthma, so this trait has probably played a big role in adjusting to life with crazy lungs and choosing to use this part of my story as a way I can help impact others positively. I have no desire to be “an inspiration”, because I’m just living my life the way its unfolded! But, if my story can help someone accept his or her own circumstances and adjust to them to live the fullest life possible, then I’m happy to be a part of that.
4)Have you always been compliant with asthma medication? Its a big issue with young people not complying. If you have ever not complied why and what happened to make you change??
I was diagnosed a month before I turned seventeen, so, it’s always been my choice to stay on top of things. I really don’t like the term compliance, because it seems so black-and-white—it’s not at all. I understand the barriers many young people face towards taking their medications as prescribed because I’ve been there. So I think it’s more fair that I’ve never been intentionally non-compliant. I’ve missed doses of medications, no doubt about that, but more often than not, I feel it when I forget before long—with that said, not everybody is like that, and if you’re consistently struggling to adhere to your prescribed plan, it’s important to discuss that with your team. What’s making it difficult to take your medications? Are there cost factors, timing factors, location factors that make it difficult to take your medication as planned? They want to help you, and as long as you’re willing to make some compromise, your care team should help you determine what best fits your life and is the best choice for your asthma.
In terms of medication regime snags, I’ve been there—and far beyond forgetting the occasional refill at the pharmacy or the pharmacy not having stock and needing to wait! I’ve often joked about wondering if any asthmatics have also hidden out in the same public bathroom stalls as I have taking their inhalers so that people don’t know. I’m generally open talking about my asthma, but I struggle to take my inhalers in front of the majority of people (don’t ask why, I really can’t give a good answer!). I love to travel, so of course this aversion to taking my inhaler in front of people means I’ve taken a few inhaler hits in hundreds of public bathrooms across Canada, Vancouver to Quebec City (including returning from San Francisco via Vancouver Airport once in the midst of a bad exacerbation and on prednisone—I can still point out the bathroom I took a neb treatment in on that layover!), and in six different US states. So, for young people, it might take a bit more creativity to keep your meds close by and on top of them—another example is my high school graduation dinner and dance, where my grad date kept my inhaler in his pocket… since it really didn’t jive with my dress!
5) Everyone wants a cure for asthma but is this and should it be the top priority in asthma research??
I think there is a lot of work that needs to be done in asthma research before we can even conceptualize that a cure might be “around the corner”. We don’t really know the mechanisms behind asthma yet, so until we can find a way that’s a sure-shot to prevent the disease, I’m not sure we can consider curing it a reality. That said, we’re still using many of the same meds we were using in the 1980s—we’ve made some advances, especially in terms of biologics, or re-formulated or paired some different drugs together, but that’s far from being close to a “cure”. It’s a multi-faceted question, really—current research is really trying to find out how we can best target asthma therapy at certain patients (based on biomarkers and “clustering”), so until we get that down solid and basically a sure-shot, I don’t think we’ve got a chance at curing asthma, because the way researchers go about that cure might look different for everybody with asthma.
6) Patients and the public should always be the focus of academic research do you think if we as asthmatics were incorporated more in the research process there would be more understanding about what the actual needs are of asthmatics rather than a researchers perceived perception??
Absolutely. I think a lot of groups, at least here in Canada and in the US, are getting more receptive to this. I’ve been lucky to attend the Medicine X Conference at Stanford University as an ePatient Scholar in 2012 and 2014, which is just one example of how some groups (in this case, Stanford Medicine) are trying to make patients a bigger part of the story of transformation in healthcare. This September, our pre-conference workshop featured the Clinical Open Innovations team at Eli Lilly (pharma)—their main goal is to demystify the clinical trials process to patients—we’re the ones it matters most to engage, and they realize this! I think in all populations of people with chronic disease, it’s important that our voices are heard at ALL stages of innovation or in building healthcare systems. If solutions are supposedly being built FOR us, it’s not okay to exclude us from building those solutions. Simply put, we’re going to be healthier if we feel we have some control over our outcomes: this goes from everything back to medication strategy (within our current options) to research and clinical trial development. Maybe it matters even if we don’t want it (because we might not know what we want if it doesn’t yet exist!) but if we can’t identify with it, then we won’t rally behind it and give the traction a new solution needs to move forward.
7) I know your involved in The Asthma Society of Canada. How did you get involved in that? What role do you have? By working with the society what do you hope to achieve?
Full disclosure: In addition to my various volunteer roles with the Asthma Society of Canada [ASC]’s National Asthma Patient Alliance, I’ve also engaged in a paid contract with the ASC developing a resource on asthma, exercise and the Air Quality Health Index (ending April 2014). Unrelated to the ASC but requiring disclosure, I’m also engaged with the Canadian Severe Asthma Network, representing the patient perspective (my appropriate title there is Patient Lead).
Sparknotes version: Twitter. (You can follow me here!) National Asthma Patient Alliance [NAPA] Executive committee member, Team Asthma Advisor, Asthma in Schools Subcommittee Co-Chair, Asthma Ambassador. Awesomeness.
I’m fully aware that didn’t make sense (which is why relying on Sparknotes of Hamlet probably didn’t do me any favours), so here’s the lengthy (Shakespearean?) version:
I’m heavy into social media, and Twitter tends to be where many awesome things in my world originate; my connection to the Asthma Society of Canada on Twitter lead to my engagement as a NAPA member, then NAPA Executive Committee member. This can get kind of confusing, so I hope I convey this accurately!
I participated in the pilot project for the Asthma Ambassadors program back in 2009; Ambassadors are volunteers from communities across Canada who act as a link between people with asthma and NAPA/the ASC (the ASC oversees NAPA, but NAPA also helps guide patient advocacy activities of the ASC—it is complicated to explain), who may wish to volunteer in their community and also, at the super-grassroots level, provide education packages to people in their community with asthma or who have a connection to people with asthma (ie. teachers, parents…).
In 2011, a position on the National Asthma Patient Alliance Executive Committee opened up in Winnipeg, which I of course, accepted (we’ve since changed structure, but at the time, we needed two representatives from each province). The NAPA Exec strives to provide a guiding voice from patients and caregivers to the activities that NAPA promotes/builds—we are independent of but overseen by the ASC, and help to guide their actions and provide support to their work that is applicable to us (…much of it, of course!). Asthma Ambassadors is just one of several NAPA programs. I was also involved in the pilot for the Team Asthma program, which encourages and supports Canadians with Asthma in physical activity—we provide education and support to other athletes with asthma (or people who just want to become more active) and in certain races in Canada will cover registration for runners who are fundraising for the ASC—we also have sweet technical t-shirts that all of our members receive for free which help start the conversation about their engagement with Team Asthma and what we do! The Team Asthma program is the one I am the MOST excited about—my degree is in Physical and Health Education and constantly offer myself in an advisory capacity—I hope to provide more guidance as this program grows, and I’m really excited about it. I also am co-chairing a subcommittee of our executive members who are passionate about creating a more universal asthma care policy across Canada. This project is (like many!) a massive undertaking, and is still very much a work in progress!
Additional information on the ASC, NAPA, and its programs can, of course, be found online at asthma.ca, asthma.ca/napa and asthma.ca/teamasthma. The ASC is also on Twitter at @asthmasociety (and I’ve been trying to spark the hashtag #ascNAPA, so you can some say hi if you’d like!)
Most of all, I hope my role with NAPA leads to developing a way that we can better promote physical activity to Canadians with asthma who are not presently physically active—while the Team Asthma program exists, it presently really targets Canadians with asthma who are already physically active. I wasn’t one of those when I was diagnosed, and I know how hard it is to get engaged (or get re-engaged after a lapse!); I’d like to continue my role with Team Asthma in a way that helps build a campaign of sorts that gives physically inactive Canadians the support they need to make positive choices.
8) Do you have any parting words of wisdom or advice to offer to anyone who feels that having asthma is just the end of the world and its all doom and gloom??
To quote To Write Love on Her Arms… “Your story is important!”
Your story, your asthma, and most importantly who YOU are, are all unique! Embrace that!
I’ve written a lot about advocacy here and, yes, part of the way I’ve chosen to thrive with asthma is in a way that hopefully will make the experiences of others with asthma better, but, it’s ALL about balance. I’ve said for years that “asthma may be a speed bump, but it’s never a road block”; you may have to approach some things differently, but you can live the life you want to with asthma—or, one even better than you’d planned!—if you make the right choices towards being empowered.
I highly encourage people with asthma to LEARN about their disease and the choices they make that impact their breathing one way or another. I don’t believe it’s really possible to create a positive coexistence with yourself when you have a chronic disease if you don’t understand what’s going on in your body—the emotional aspect of any chronic disease is often overlooked, and it’s important to recognize how you’re feeling about—and towards—your asthma. Once you understand your asthma, you’re in a better position to self-advocate—in the end, it’s about keeping yourself as healthy and happy as possible! Self advocacy is as much being engaged with your doctors and communicating what’s working and what doesn’t, to telling people they need to not smoke around you, and walking away if they don’t respect that—it’s really individual, though, and it’s about becoming educated about your disease and your desires and refusing to compromise on your goals, and instead collaborating with others to reach those goals successfully and safely.
Finally, remember: You are NOT your disease! It is a part of your life, whether you’ve been at it a long time or are new at it, but it’s imperative to not let your asthma overtake who you really are. Yes, asthma’s a part of my story, and it’s become a bigger part of my story than I’d anticipated, but that’s in a positive way for me, not a negative one. And, of course, just because I have interest in the world of chronic disease now because of my asthma, it doesn’t mean that I don’t enjoy other things, too :). Key point: it’s all about balance, and if you’re struggling to find that balance, it might be worthwhile considering talking to your doctor or reaching out to a mental health care provider: it doesn’t mean you’re “crazy”, it means you’re being proactive in keeping your life on track—because that can take a little more work to find a happy medium living with any chronic disease.
9) Last one! What is your greatest achievement?
I hope this is yet to come, really! Certainly being selected as an ePatient Scholarship recipient at the Medicine X conference at Stanford University is among them, and I was fortunate to attend in both 2012 and 2014—it’s a perspective-changing experience where the patient voice is welcomed, and technology is embraced—whether that is in a way that will affect millions, or will empower a single person to track their health more efficiently and help them develop better lifestyle habits.
I think the ONE thing I would consider my “greatest” achievement to-date is graduating from university this past June. It took me five years to get my three-year degree, and I was also diagnosed with a learning disability and ADHD in my 4th of those 5 years—that information changed the way I approached school, and ultimately, was another positive thing that lead to more success, I just wish I knew earlier what I know now! I have a Bachelor of Physical and Health Education (I studied kinesiology and applied health), and had a pretty unique experience for what is typically perceived of university! Not only did I gain knowledge that I could immediately apply to my own life (and implement with others on occasion!), I’m not sure how often people get to spend time hopping on one foot for a half hour or spending type in the gym playing “kids’ games” while in university—I mean, I did have the occasional all-nighter writing papers, too, though!
Additionally, while I don’t blog as much any more, I’ve made a lot of important connections blogging. You can learn more about me at my blog, www.kerriontheprairies.com and http://facebook.com/kerriontheprairies