"I was diagnosed with asthma in 2008, when I was sixteen. I was diagnosed without having access to a family doctor, so I was misdiagnosed twice with bronchitis and given antibiotics as a result. Needless to say, they didn’t help my breathing at all."

Mediaplanet  When were you diagnosed with asthma and what were your initial struggles?

Kerri MacKay  I was diagnosed with asthma in 2008, when I was sixteen. I was diagnosed without having access to a family doctor, so I was misdiagnosed twice with bronchitis and given antibiotics as a result. Needless to say, they didn’t help my breathing at all. I returned to the second walk-in clinic doctor to tell him I was still not any better six weeks later, and that I was pretty sure I didn’t have bronchitis.

He prescribed a short-acting inhaler for acute symptoms, which I used multiple times a day for the next six months, when I was finally accepted by a primary care doctor. It took us several more years to get my asthma under reasonable control.

I also struggled with the lack of resources available for adolescents. I found some amazing people online to help me problem solve. This issue is every bit as true as a young adult: our needs are still different than that of people who are, say, 35 and older, and very different from children.

MP  What changes and advancements need to be made within the asthma community for more effective care?

KM  Given that asthma is so common, it always frustrates me that there is such a small organic patient community. I think, though, that comes from asthma being so common.

Since ten percent of Canadians live with this disease, and we are socialized to now understand that people with asthma can do anything, we tend to frame it internally as “not a big deal”. The reality is, patients need the support of other patients just as much as any other patient group: we may have a common disease, but it’s still a chronic disease that can and does have negative impact on quality of life, especially as most people do not have their disease under control.

"In terms of physician care, Asthma Care Plans (also known as Asthma Action Plans) need to be standardized and created with a patient so that they can respond to their symptoms effectively."

In terms of physician care, Asthma Care Plans (also known as Asthma Action Plans) need to be standardized and created with a patient so that they can respond to their symptoms effectively. There are also amazing people across Canada who are trained health professionals with additional training in asthma called Certified Asthma Educators or Certified Respiratory Educators (who also work with individuals with COPD).

By the time my doctor chose to refer me to an Educator, the Educator wasn’t sure why my doctor had referred me, as I had a good handle on my asthma, medication use, triggers, and a good understanding of my disease. Using these resources would be of huge benefit to many patients, but also provide further information to physicians about patients who are well informed but still uncontrolled.

MP  How has your work with NAPA affected asthma in Canada?

KM  A couple of years ago, I had the opportunity to write the Asthma Society of Canada’s physical activity resource, “Breathe Easy: A guide to being healthy and active with asthma.” The guide essentially breaks down asthma, exercise induced asthma, other triggers, how to exercise safely with asthma and build a fitness program independently, and also brings in the Air Quality Health Index and how to use that information to plan or postpone workouts based on air quality, specific to people with health conditions that might be impacted by air pollution, like asthma.

This has been my favourite project to date. However, we’ve also hosted a few patient education webinars in the last year, which I think are a great way to educate the community on a larger scale, and pull in experts on various subjects from across the country to share their knowledge with our community. 

As a whole, there have been big strides in providing support to Ryan’s Law in Ontario, ensuring kids have access to their asthma medications while at school. In Manitoba, inhaler access isn’t an issue as students are expected to have their quick-acting inhalers on them at all times—it is not allowed to be locked up or in another room—but it’s unsettling to me that while now children in Ontario are able to self-carry, this is only at the heartbreaking expensive of 12-year-old, Ryan Gibbons, who passed away because he couldn’t access his medication quickly enough.

Student access to life-saving medications is not standardized across the country: Ryan’s Law is sparking that conversation, but, every day that schools in other provinces go without making this recommendation to make medication access a reality, children with asthma are put at risk.

MP  What advice can you give to someone recently diagnosed with asthma?

KM  Learn as much as you can about your disease, how your lungs respond to certain triggers, and what you can do to avoid those problems. Advocate for yourself — you know what you want to do with your life, and don’t settle for anything less than you would have before your diagnosis. Ask to be referred to an asthma specialist if after a medication switch or two you don’t feel adequately controlled, or if you simply don’t feel the person taking care of you does not have enough knowledge of asthma, and connect with other patients if you can.

Be patient — it can be a long road, and it can be as hard on your mental health as it is on your body — but know that support is out there. In addition to volunteering with NAPA, I’m also the Patient Lead with the Canadian Severe Asthma Network so there are many resources out there to help you find resources, connection to others, and excellent care. If you’re not satisfied, keep pushing, but take a break when you need to. 

Ultimately, don’t compromise your standards or abandon your goals just because of asthma. Advocacy doesn’t have to be anything huge: living an active, healthy life, and doing the things you want to do is the best way to educate people about what your world is like with asthma in it — I always tell people that asthma may be a speed-bump, but it never has to be a roadblock. To underscore, it might take some work, but you CAN own your disease!

You can read more from Kerri Mackay on her advocacy for asthma, and she her guide to living with it here.