I was diagnosed with asthma a few months ago, I’m 16 and incredibly active, so adjusting to not being able to walk up a flight of stairs for a few days after a really bad asthma attack was challenging. During a really bad asthma attack, I lost all ability to communicate for myself. It was terrifying. Asthma Canada provided me with the tools and education I needed to live a healthy, productive, active, safe life with asthma. Including what to do if I can’t communicate for myself.
Hi, I am here to tell my story about asthma, I was only 4 months old when I have my very first asthma attack and it was scary but my Mom rushed me to the hospital, she almost had a heart attack because she did not know what was wrong with me. I have been living with asthma for a very long time and yes it is a pain but this is something I can’t grow out of. I hate asthma because I play sports and it slows me down when I can’t breathe, and if you are reading this I am sorry that you are going though it, or if you are trying to learn about this you came to the right site.
I am 59 years old. I was diagnosed early with asthma at the age of one. My worry is that although the pharmaceutical company is currently covering the cost for one of my drugs with an approximate price tag of $2,400 per 4 week injection, what will happen when they stop covering it? My monthly income doesn’t even come to this, so there’s no way I could afford it.
I am using three puffers. I am working part time with no benefits. I have had to pay for private healthcare insurance which has a $1,000 dollar [annual] medication limit. I usually reach this limit in 5 months and then pay out of pocket. I find it difficult to keep up with these expenses.
Our son in now 5 years old, the past five years have been very difficult with hospital stays, multiple operations, multiple doctors’ appointments and running back to the pharmacy for his prescriptions. He tries to lead to a normal life and we let him try. He has tried sports and is doing well in school but we fear each day when he will have another severe attack. Asthma affects the whole family not just the person with asthma.
I was diagnosed with Asthma at age 12, but have probably had it since I was 8. When the doctor told me that Asthma is a life-long condition, I could not mentally process the fact that I would have to deal with it for the rest of my life. Even now, at age 19, it’s still hard to process. I’ve learnt to take each day as it comes with Asthma because it’s hard to think of the future.
I moved to Grimsby, Ontario in 2003. I was unaware of the pollution that was directly caused by the steel mills located in the Hamilton area. This black particulate was and is a by-product of steel production. When I asked about the source of this dirty substance, I was told it was simply dust. Well, the dust gave me asthma at the ripe old age of 58 in 2005.
My asthma was severe enough that I slept in a mist tent every night, I came very close to needing home oxygen. I was rushed to the ER innumerable times. Spent countless days and weeks in the hospital. My condition was so severe that my parents considered moving to Arizona for its better climate.
Asthma has impacted my life in many ways. I have felt social isolation as I have no control over my environment in public places where smoke or scents can trigger an attack. I have high absenteeism due to triggers at the workplace and my immune system is so compromised that I tend to pick up all viruses going around the work place. My emotional and mental health has taken a blow from colleagues comments or strangers who move away or outright say you should stay home with that cough and wheeze not pass your germs on.
My doctors have experimented with different drugs including the one of the new biogenetic we still haven’t gotten the right combination. It is so unpredictable and misunderstood disease. Not enough of society is educated on how this disease affects those with it or the different severity of asthma. I’ve even educated a few health professionals. I’m thankful for Asthma Canada.
As a parent of a (now) adolescent with persistent severe asthma there is a list of things it means to me. It means sleepless nights sitting bedside counting breaths. It means learning and understanding medical jargon usually only heard on tv drama shows. It means monitoring daily (hourly) levels and knowing when to call it quits with home action plans and make the trek to the emergency. It means worrying every time the school calls during the day. It means being not just a mom but also a pharmacist, a nurse, a lab tech, a cheerleader, a teacher for when he misses more school than he attends and a great actor in order to hide your fear while watching your child turn blue. It means strength and power and it means enjoying every “good” day because a bad one is just around the corner.
I used to be almost 300lbs. My diet was horrible and exercise was a bad word. I also didn’t take care of my asthma. I didn’t use my Symbicort as prescribed and I would end up in the hospital a few times every year with asthma I couldn’t control. This would leave me on prednisone which was never a pleasant experience.
Over the last three years I have lost over 100lbs, started going to the gym and running. I also went vegan. In the last year I have run my first marathon and my first ultra-marathon (50km). My asthma is now under control with regular use of my Symbicort and the incidence of needing a rescue inhaler is limited to 1-2 times per month, if that. All of these lifestyle changes have helped get me to this point.
Cigarette smoke – [in all forms] – is a large trigger for me and can induce an asthma attack. Walking some streets in cities or taking transit means having to hold my breath and wait for a smoke-free moment to take a breath. I have had to move seats on the train when seated near someone who smokes, or stand far from the bus stop. I’ve lived in a few cities in Canada and this is a consistent issue.
I was eventually diagnosed with Severe Asthma. After it became clear I had tried every modestly priced asthma pharmaceutical available, my specialists prescribed Xolair and an expensive antifungal. Total cost – $20,000 annually. With these drugs I am able to live a normal life. Thankfully my health insurance covers 90% of the cost. However, there is a lifetime limit. I am in a good financial position, but I worry about what will happen when my insurance runs out.
I worry even more about friends I’ve met through Asthma Canada who do not have access to the drugs they need. Why? Because they can’t get insurance and their provincial coverage does not include such necessary but expensive drugs as Xolair.
It is my understanding that Toronto has had, for a number of years, a measure of air quality and warnings out for people like myself who suffer lung trouble. It would be terrific if more Canadian communities across the nation would put air quality warnings on the news websites, weather websites, newspapers, and many other places where ever possible so that persons suffering from any sort of breathing problem [are] aware of weather conditions, and what can happen, where to get help, etc. When the weather is really cold out here in Calgary, or there is a strong wind outside, or it looks like I may have troubles breathing if I am not careful, I do use the inhaler, if I have to absolutely go out, but stay in if going out is unnecessary.
I grew up in a small town in NB and was diagnosed with asthma when I was 2 years old. I spent my entire childhood and young adult life dependent on knowing where my inhaler was at all times. My family doctor had no problem refilling my inhaler so much that I would sometimes go through one in only a few weeks! I went to my doctor many times for asthma and was never referred to a specialist. I would have asthma attacks regularly. If I went for a run I would need to use it before and during exercise.
I did my undergraduate degree in Quebec and nothing really changed. I was eventually put on other inhalers to try to control my asthma, but nothing was working and I still wasn’t referred to a specialist.
I did my graduate degree in PEI and at my insistence, I was referred by the campus doctor to a specialist at the local hospital. He didn’t even order pulmonary function testing and put me on yet another inhaler. Meanwhile I would have asthma attacks in my home that would lead me crawling through my house to get to my inhaler in my purse, because I was too lightheaded and winded to stand and walk.
I think that awareness needs to start with the GP and knowing there isn’t one drug for everyone (I’ve tried most of them).
I am a parent of a now 9 year old severe asthmatic. A short time after I returned to work from my maternity leave is when our lives changed forever.
My son had been in the hospital a few times with what they classified as asthma over the course of his life from beginning. He was approximately 18 months old when I went to pick him up at day care after work. I arrived at the daycare to find my son lying in his crib unresponsive and blue. The daycare staff just thought that he was extra tired and sick. I met with an asthma specialist who told me that our lives were going to involve hospital visits every few weeks because of asthma issues in his environment or I could leave work and control his environment until he was strong enough to do it himself.
I took a leave of absence from work in order to figure out a route. The decision was made that I was going to leave my career that I spent 14 years building, ironically, in clinical research to ensure that our son was as safe as possible. I have still not returned back to work approximately 8 years later.
When my son started school the issues became obvious that his environment triggered a great deal of his asthma issues meaning he missed a lot of school. Year one he missed 67 days of school because of asthma.
Being the care giver of an asthmatic child is not an easy task. It almost seems like a balancing act most times.
In 2018, Rudhro Prince tragically passed away at the age of eight from a sudden asthma attack. Now, his family is sharing their story and working with Asthma Canada to help create a world without asthma.
My name is Ria Bailey. I am from Ontario, Canada and I have mild persistent asthma. When I was younger I never use to have trouble breathing. I could run like the wind and nothing would bother me. It wasn’t until I turned 11 that I started to realize the change in my breathing. I would have a hard time running in gym class and at recess. Walking outside during the winters would be tough, and being around certain pets during summer became brutal. I also had restless nights as I couldn’t sleep due to the lack of oxygen my body could take in. I noticed my chest and my back would get tighter, I was often very tired, and I always found I had a persistent cough. When I finally told my mom about what was going on with my breathing, it came as no shock to her as asthma runs in our family. I went to my paediatrician and she diagnosed me with mild persistent asthma. At that moment I said to myself, “I may have asthma, but asthma does not have me”. My paediatrician taught me how to identify some of the triggers I was having with my asthma that could be allergenic and non allergenic, but I thought to myself, why stop there, what can I do to educate myself more on Asthma today? Asthma Canada has helped me to learn more about asthma and how millions of people in Canada are affected by asthma every year. Learning about your own asthma is important as you learn how treat it, and learn how to cope with it in your everyday life. Asthma Canada has taught how to manage some of my symptoms and come up with an action plan if and when I have asthma attacks. I am now able to identify my triggers and know what steps I need to take to treat my asthma attacks. Living with asthma can be a challenge but it doesn’t ruin your life. I beat asthma everyday. Know that with proper care, and treatment, you can live your life and continue to do all your favourite activities. Remember asthma doesn’t come with manual, it comes with a warrior who never gives up no matter what.
My daughter was diagnosed with asthma as a baby and now, at 16 years old, we are hard-pressed to find any part of her life that is not negatively impacted by her asthma. She has multiple significant episodes per year, and usually at least one hospitalization. As a result, she has missed at least a month of school every year – requiring her to have an Individual Education Plan signed by the school district to help accommodate her absences. Her time away from school impacts her social life as well.
I hear my friends talk about their kids dreams – backpacking across Europe, moving to another country or to a remote location – and I know these aren’t options for [my daughter]. I can’t even let her vacation with friends, and our family holidays are usually limited to staying within the country and within vicinity of a hospital.
One of the hardest things for us is the complete lack of understanding from the general community. I wish I had a dollar for every time someone has told me ‘well – it’s just asthma’ or ‘why are you worried – they’re going to outgrow it’. I have two friends with kids who have gone through 18 month treatment plans for cancer who admit that Charlotte, my daughter, has spent more time in hospital and has taken more medication than their kids – but gets none of the sympathy and understanding. Not that I would wish cancer on anyone – but honestly, I would prefer to put her through that kind of treatment if we had a high percentage chance of full remission that these kids have been fortunate enough to have.
I am a 55 year old male who has had Asthma since childhood. I suffered as a child from bronchitis and placed into oxygen tents. I was in a program at Scarborough General to learn how to control my breathing by being shown a specific exercise to help control my lungs when I get tight.
I have in the past been hospitalized with fluid on my lungs. I did at a younger age smoke tobacco which was not the smartest thing for someone with asthma.
I have thankfully not smoked in many years now. Unfortunately, I get colds/sick easily due to a low immune system and always get a lung infection. This past year, I did get the flu which caused me to get bronchitis and aggravated my asthma greatly. I lost almost 2 weeks of work due to it. I do have a Respirologist and he has me on a steroidal inhaler to help my lungs perform better. I suffer from very mild to acute Asthma frequently.
My advice to those with asthma, stay away from ANY form of smoking etc. and those who do smoke. your lungs will thank you when you get older. Exercise to increase your lung capacity, get a good medical doctor and specialist. Keep your living environment as dust free as possible. Be aware that extreme cold air and high humidity can be difficult. Get as much information to become better informed about Asthma. Importantly, triggers, be aware of what will trigger your asthma be able to deal with them as best you can.
I think that awareness needs to start with the GP and knowing there isn’t one drug for everyone (I’ve tried most of them).
Two years ago we nearly lost, our then, 10 year old son to asthma. He has suffered from asthma since he was a baby whenever he would have a cold. Hospital visits were common, and like any other time he’d have asthma severe enough that his ventolin was not helping, we would go to our local Children’s Hospital. On this occasion, he collapsed when he was waiting at the emergency triage and went into cardiac arrest. It took doctors and nurses 15 mins to get his heart started again. He wouldn’t be here today if he was anywhere else. Unfortunately due to the lack of oxygen to his brain while in cardiac arrest, he suffered a permanent brain injury. He lost his vision, his ability to walk, talk or eat. It was a tough time, but happy to say he has made a pretty remarkable recovery. He regained his vision after 6 months and looks and acts like you wouldn’t have even know he had a brain injury. He’s our Miracle and we are so proud of him.
On the Importance of Access to Medication
“I’m a twenty-something, self-employed Manitoban with a chronic disease. I take common medications for asthma and ADHD, which does not mean inexpensive. I have been uninsured since graduating university in 2014 and [have lost] coverage through my dad’s group plan he had through his employer. Near the end of each year, I sit down with a spreadsheet and calculate whether or not it is cheaper for me to pay out-of-pocket for my pharmacare deductible, extra medical expenses, dental care, and travel insurance, or if it is time to opt into an insurance plan that might actually accept someone like me, with multiple “pre-existing condition”. I am young, and though I may have chronic diseases, affordable Pharmacare coverage will keep me healthy. However, as I cycle into different phases of my life, Pharmacare deductibles may move out of my financial reach – a reality I stare down regularly”.
On Being an ACMA Member:
“I’ve become empowered by changing how I think about my disease. My circumstances and my story help explain me—but asthma doesn’t define me.”
Slow and Unsteady: Diagnosis.
“It was Winter 2008 when I started having issues breathing at a choir event. A friend actually offered me her inhaler! I declined—I didn’t have asthma, though my lungs did feel tight. A few days later, a walk-in clinic doctor told me I had bronchitis. I took antibiotics, but I didn’t get better. A month later, a different walk-in doctor prescribed antibiotics. No good, of course. As my paediatrician had retired, I was stuck: I returned to the walk-in. The second doctor saw me again, and I asked if I could have asthma. He nodded and prescribed a few rescue inhalers.”
My gym class hating days
“When I met my new family doctor six months later, I was a couple months into grade 12. Physical Education had just become mandatory through grade 12 in Manitoba. I was the classic, pain-in-the-butt gym class hating student: I did everything I could to fake it or get out of Phys Ed! Despite now having a diagnosis of asthma, my disease was still uncontrolled. On Halloween 2008, I started my first of what would be many control medication trials. At this point, I realized I likely had exercise induced asthma, at least, for close to a decade! That would probably make anybody hate exercise!”
Bad lungs? Join a dance class.
“Around this time, I started a blog about my asthma experiences. A few friends online started gradually reshaping the physical actiivty hatred in my mind. Despite still feeling negatively towards PE, I found myself in a dance class after dropping first period Law in my last term of high school. I had no idea what I was doing. Dance and I seemed an odd mix given my lack of coordination, never mind my extremely uncontrolled asthma! I worked hard to control my asthma, but even with some medication switches, it was as bad as it was at diagnosis. My dance teacher was the sweetest little lady, and pushed me to just keep trying as my lungs would let me. Dance became a challenge to me. Dance is art, after all—it’s tough to be ‘wrong’! For the first time, I learned I could enjoy physical activity. I felt a positive connection with what my body could do, even if my lungs didn’t work right!”
Choosing better: Asthma control + studying kinesiology
“More than I could say of PE, what I learned in dance class stuck with me. I changed majors often throughout university, then surprised myself when I discovered my love for kinesiology. Yes, that’s basically all about exercise and sport! Through a lot of self-advocacy, I gained better control of my asthma over the course of about four years. I was finally able to enjoy being more active. In a way, having a chronic disease has actually made me healthier!”
The ripple effect: building a team
“Chronicling my asthma online led to a lot of positive changes. My sixteen-year-old self would never have believed that at diagnosis! I have gained amazing friends around the world who also live with this disease–they push me to be better, despite my lungs. My ‘asthma team’ is no longer medical professionals: I am an engaged member of my own team. This fact, at least initially, can be mindboggling and even frustrating to some… and, I am okay with that!
My asthma control remains questionable, but I have become empowered by changing how I think about my disease. I have a choice to own my asthma, and to share my story to help empower others and grow good things! This is what I’ve got. My circumstances and my story help explain me—but asthma doesn’t define me.”
My earliest childhood memories, apart from that family trip to Disneyworld that no one ever forgets, revolved around my ever-so-frequent middle-of-the-night trips to the Alberta Children’s Hospital Emergency Room. Having a large mask placed over my face, air and smoke billowing out, was a fairly intimidating experience for an 8-year-old. These experiences started to become second nature to me and my dad though, who was almost certainly the one to roll out of bed at 3am to rush me off to the hospital. While challenging and scary to face, these nighttime trips were my first exposures to a condition that has affected some aspect of my life for the past 20+ years.
Armed with my first Ventolin inhaler and spacer at age 8, suddenly controlling my symptoms was not as difficult as it had been before. Although there was nowhere I could go without it, there was a feeling of comfort knowing that I had the medication I needed to ensure trips to the Emergency Room became increasingly less frequent. Even more, I started to recognize what it was that was making me produce the noisy, wheezy sounds from my lungs; being equipped with this knowledge only helped me continue to adapt to being an asthmatic.
I wasn’t alone
One of my earliest worries about asthma was the feeling that I was the only one who had to deal with it. Very early on though, my dad explained to me that he too grew up experiencing these same symptoms. I guess I always knew he had this blue thing that he puffed into his mouth every once and a while, but until I started experiencing symptoms myself I didn’t think twice about what he may have been doing. Nor did I think it would ever be something I would have to do too.
Embarrassed and self-conscious
Although I became more accustomed to my asthma diagnosis and use of an inhaler, the same couldn’t always be said for my classmates, teachers and sports coaches. I felt like they didn’t understand why I had to take a break halfway through gym class or why having flowers in the classroom was a bad idea. The education around the topic was lacking and this resulted in me feeling embarrassed and self-conscious to “take a puff” in the middle of a class or ask to be excused for the same. It started to feel like it was more my problem as opposed to one many others experienced just as often if not worse than me.
As my recognition of triggers for a flare improved as I got older, so too did my ability to participate in any events that I wanted. I wasn’t the fastest kid on the soccer field or the best athlete on the basketball court, but I was almost certainly one of the kids having the most fun doing all of it! With the understanding that these activities “triggered” the spasms that were happening in my lungs, I knew that little blue inhaler would be my best friend either before or after the onset of my symptoms. It started to become a part of my pre-game routine while playing basketball in High School and my sensitivity to using it in front of other people slowly faded away. If I wanted to do everything without restrictions, I had to take it upon myself, with constant support and reassurance from friends and family, to control my asthma and not let my condition dictate my abilities.
Every experience is a learning experience
Through the years I have tried to find more ways to be involved in asthma education and encouraging young people to face their condition head-on. Participating in research, both as a subject and researcher, has kept me closest to the field and it will continue to be a passion of mine for years to come. My advice would be to tackle your condition head on and take every opportunity to learn, teach and grow.
“My mom remembers my first breathing issue when I was 6 months old. She was travelling alone with me and I had an awful chest cold. Turns out I had pneumonia and at one point, they were afraid they would lose me. From then on, every time I caught a cold, it would go straight to my chest and linger with a horrible cough, wheezing, and difficulties breathing. They were pretty sure I had asthma, but back 40 plus years ago living in the small town of Revelstoke, there wasn’t a test to officially diagnose asthma. I frequented our family doctor, I tried many different puffers, and had countless admissions to the hospital. I vividly remember one nurse in emergency asking my mom why I was forcing myself to have an asthma attack this time. Why did I want attention? After that I would often hesitate to tell my parents I was having an asthma attack. I would lie in bed wheezing and coughing. Eventually my mom would hear my cough and drag me into emergency. I was tired of the medical staff assuming I was bringing this upon myself.”
“Throughout elementary school, I had many notes from my mom to sit out physical education. ‘Please excuse Stacey from gym class today’. Why? Because I had asthma and it was not well controlled. My triggers were allergies (no one told us to consider getting rid of the cat, never mind off of my bed!), colds, exercise, strong odours and fumes, cigarette smoke, and stress.”
THE DECISION TO BECOME A RESPIRATORY THERAPIST
“Grade 11, I was talking with the school counsellor about options for post-secondary education. I knew I wanted to pursue something in the health care field. Physiotherapy had a long wait, medicine was in Vancouver which was far away and scary, I knew I didn’t want to be a nurse. I saw a sign on the counsellor’s wall for the Respiratory Therapy program. The first thing the counsellor said was, ‘You can’t do that course Stacey, it’s too hard’. WELL…. Game on, no one was going to tell me I couldn’t do it! Yes, it was a challenging course, but I finished and accepted a position at BC Children’s hospital in Vancouver in 1993.
MY WORK AS A CERTIFITED RESPIRATORY EDUCATOR (CRE)
“I worked as an Acute Care Therapist for many years before starting my training to become a Certified Respiratory Educator. I am currently working at a community hospital in the position of Pulmonary Rehabilitation Coordinator. I coordinate the Asthma clinic and the Pulmonary Rehabilitation program, working closely with patients with lung disease. This spring I added Certified Tobacco Educator to my credentials. My passion has and still is my work in the Asthma Clinic. I see a large number of pediatric patients. I either work with them towards obtaining a diagnosis, they are in for education and follow up, or they had a recent exacerbation prompting a referral to the clinic. Despite all of the advances in our understanding and treatment of asthma, there are still many misconceptions, within the general public and the medical community. I recently saw a 14 year old with uncontrolled asthma, who was told by several doctors throughout the years the solution was to not be active, just don’t play sports. Try to pick artsy hobbies. Once we figured out what was going on, her parents felt awful she was not treated appropriately for all those years. As an asthmatic myself, I am the first to say to my patients, ‘I have asthma, I have to take puffers every day of my life, and yes, I live a very active and healthy life. I have exacerbations every year that require escalation of my treatment, but in-between, I do what I love to do, which for me is running and training for marathons’.”
MY PERSONAL GOALS
“I feel for kids who have been told they should try not to be active or participate in sports. I don’t believe asthma should stop anyone from doing what you love. My goal is to continue to live my life, as healthy and active as I can, and to share my knowledge and experience of asthma with others.”
“Back in the 1970s, when I was growing up in small town Canada, there wasn’t the sympathy and understanding there is now about asthma – most school teachers were sympathetic but didn’t really understand the condition. Other than respecting requests from parents (and my Dad who was a physician) they didn’t get why me having asthma meant that I couldn’t keep up with the other children in gym class.”
“For a long time, I wouldn’t take part in sports and exercise as much as I could have because I knew that even if I tried I wouldn’t have the stamina of other people. I didn’t want to fail so I didn’t really try.”
“But one day I went to my local shopping mall early in the morning to meet a business client and I saw a variety of mall-walkers – people of different ages and abilities all exercising and walking the perimeter of the promenade of the mall’s upper level. I was well aware of mall-walkers but had never seen them for myself: an elderly man in a silk pyjama doing the slow, controlled and rhythmic movements of tai-chi; a snow-haired lady with a walker determinedly pushing herself past the window displays; a younger couple powerwalking at a fast pace before heading to work.”
Getting my walking shoes
“A few days later, I inquired with Customer Service at the mall about when they opened in the mornings and bought myself walking shoes. I chose a good-quality pair as I knew that would mean I’d be more likely to stick with it. The first time I walked, I was just able to do 2 rounds of the upper level which is less than 2 ½ kilometres before I became short of breath and wheezy. I came back feeling terrible. But looking at the other walkers around me I kept at it and I built up surprisingly quickly.”
Forming friends and forming a habit (the good kind)
“Now and throughout the winter, I mall walk almost every day and can easily do 4 rounds which is over 5 kilometres on weekdays and sometimes 5 rounds (over 6 km) on the weekends. Once a month I enjoy a coffee in the food court with some new friends like Mr. Sun Lin Chou – the elderly man who I saw doing tai chi on the first day. While I prefer to walk outdoors in warmer weather, staying indoors at the mall avoids some triggers for my asthma including extreme cold and smog.”
“I obviously still have asthma and it is noticeably worse in the winter. But I feel much better now that I’m more fit, and I’ve noticed my reliever inhalers last a lot longer because I don’t need to use them as much. My mall walking has also helped me control my blood sugar without medication and helped my arthritis pain as well. Getting fit has also made me more aware of what I put into my body – my diet’s better and I don’t drink as much.”