When Chelsea Gagnon was born 29 years ago, they knew there was something special about her from the start. She was born with meconium ileus, a disorder causing a blockage in her intestines, which she needed surgery to correct. After the surgery, Chelsea’s doctors did more testing and found out that this surgery would most likely not be her last, rather it was just the beginning of what would come to be life long medical issues. They discovered a mutation in her genes causing Cystic Fibrosis, the most common fatal genetic disease in young Canadians. In fact, the projected life expectancy at that time was only 20 years of age.
Due to the nature of Cystic Fibrosis, it can cause a large variety of life altering symptoms. The disease affects the cells in the body that create many substances we need to survive, most significantly, sweat, mucus, and digestive juices. This causes damage to the lungs, digestive system, and other organs of the body. Instead of the body secreting these substances like normal, Cystic Fibrosis cause these fluids to be thick and sticky, acting to clog the ducts of the body rather than lubricating them as it should.
Because of the fact that there are many different gene mutations that cause this disease, patients all experience it differently, with different symptom and severity. As for Chelsea, she deals with a wide range of symptoms. “The most recognizable of my symptoms”, she notes, “[is that] I cough a lot”. However, her symptoms expand beyond what the eye can see and aren’t always noticeable to others. She also deals with shortness of breath, digestive problems, and malaise (a general feeling of being unwell), depression, generalized anxiety disorder, Cystic Fibrosis related Diabetes, and possible autoimmune disease.
For most, living life with a terminal medical condition like Cystic Fibrosis would be unimaginable but, for Chelsea, she didn’t feel her childhood was much different that anyone else’s. “It was normal,” she recalls, “or as far as I knew it was”. When asked about her earliest memory though, it is one quite unique to having a chronic illness. “Funnily enough, it’s me standing in my kitchen with my mom, swallowing my enzymes for the first time” she shares. However, she went to school, had friends, and loved to play sports like just like every other kid. For her, needing more sick days than her friends, doing her physio twice a day, once when she woke up and once before she went to bed, and taking handfuls of pills before meals was just part of her everyday routine.
Though Chelsea isn’t sure exactly when the realization happened, she did eventually notice the fact that she was the only one doing these things, that her friends weren’t needing to go visit the hospital every 3 months for a checkup. This never held Chelsea back though. After finishing school, she decided to continue her education and was accepted to McGill University, ranked the best university in Canada by Maclean’s, to complete her bachelor in elementary education. Although she didn’t let her medical condition get in the way of her complete lung her education, it definitely wasn’t all smooth sailing for her. Unbeknownst to her, she would face discrimination due to something she has absolutely no control over, her Cystic Fibrosis.
As part of her programs requirements, she had to complete 4 teaching internships to graduate. During her third internship, about a month into her placement, she was having a lot of problems with an infection that had been cultured from her lungs and had to start a week long treatment to fight the bacteria. “Unfortunately, I had an adverse reaction to one of the inhaled medications that was a part of the regimen,” she shares, “I really didn’t feel great”. Knowing her right to 4 days off during the internship, Chelsea emailed the teacher she was working with explaining her situation and asked for a day off. The teacher was receptive to this, even encouraging her to take an extra day off. “She assured me it would be beneficial to take the extra rest” Chelsea shares; that’s why, when she received an email the next morning stating her internship would be canceled, she was taken aback.
“If it had happened to me today,” she reflects, “I would no doubt have stood up for myself [but] I was younger and less sure of myself.” Chelsea was so hurt by the situation that she couldn’t tell the proper people about it awhile. Not only was she being discriminated against as they clearly stated they did not want her continuing at their school because of her health, but it caused her to fall a semester behind in her schooling. Chelsea isn’t the type to give up easily so she continued on regardless and graduated with her B.Ed in 2014. When you’re being discriminated against, it’s not always easy to stand up and say something because, sometimes, you don’t realize right away that you are being discriminated against.
After her university years, Chelsea’s health continued to quickly decline. “My life was a downward spiral” she recalls. “Cystic Fibrosis is degenerative, so as I got older, I got sicker”. This progression of her illness posed quite a challenge for her, really affecting her quality of life. She started needing to be frequently admitted to the hospital for treatment. “I was admitted to the hospital every few months [and] needed IV antibiotic intervention even more often than that.” Chelsea shares, “I lived my life on the couch or in bed, resigned to getting sicker as time wore on”.
About a year ago though, Chelsea got some life changing news that offered some hope for the future. Her and her medical team had made the decision to try a novel medication for Cystic Fibrosis. This drug, Orkambi, is revolutionary in treating certain cases of Cystic fibrosis because, instead of masking or controlling the symptoms from the disease, it actually addresses the cause of it, starting from the gene mutation, rather than just treating the symptoms it causes as prior treatments did. This decision was a big one for Chelsea, one that made her extremely nervous. Interestingly, when Chelsea started Orkambi last year, it wasn’t the first time she had ever taken it.
Four years ago, prior to the medication being released on the market, “I was involved in the trials,” Chelsea shares, “but [I] was always on a placebo or too low of a dose to help me”. Now, one year after starting it, she feels that she “has definitely reaped the benefits of being on the drug.” A simple treatment of two pills twice a day has had an enormous positive effect on Chelsea’s life. “Every single aspect of my live has changed after Orkambi” shares Chelsea, “even small things like brushing my teeth and putting on earrings”. She has also noticed significant improvements in her energy levels. When she wakes up, she is no longer exhausted, now waking up “feeling refreshed, energized, and ready to take on a full day of activity”. Just over a year ago, Chelsea was struggling to get out of bed and now she’s able to work part time, to see her friends, to cook, and to do things she enjoys. “Orkambi has given me my life back,” Chelsea shares with gratitude, “I have a future again.”
Last fall, even though Chelsea had been feeling so much improvement from Orkambi, she still felt as though a piece was missing. “The way it makes me feel is amazing” shares Chelsea, “[it’s] unlike anything I’ve ever felt before.” Reflecting about her big health improvements, she started to feel bad. “The fact that not everyone is able to feel like this and that some people’s health is still deteriorating” she discusses, “is so unjust”. A lot of people don’t have access to the medication, either because of socioeconomic factor, where they live, and various other scenarios. This is what drove Chelsea to start working with the Cystic Fibrosis Foundation on a project that she is very passionate about: helping to make change so that everyone who can benefit from Orkmabi has the chance to improve.
Chelsea’s main focus in her advocacy currently is getting Orkambi covered throughout all Canadian provinces. Medications like Orkambi are very costly and, with many people with disabilities are unable work and/or are living below the poverty belt, they aren’t able to access them. “Access to healthcare is a fundamental right [but] bureaucracy currently prevents everyone from accessing it in a fair manner”, Chelsea shares, “we must find a better, more efficient way of getting the medical innovations to those who need them”. Though Chelsea and her team are still working hard to assure funding for these novel drugs in Canada, her voice has certainly has a significant impact in this fight.
Although Chelsea’s doesn’t let her illness stop her from doing everything she dreams, it has definitely shaped who she is today. “Every waking moment,” she shares, “I am thinking of managing my diseases and how to best stay healthy”. Though life with Cystic Fibrosis can be challenging, Chelsea is such bright young lady with a huge future ahead of her and the heart of a fighter so, to finish off our interview, I wanted to know what is next for her. She aspires to “continue to fight for access for medications, organ donation, accessibility, women’s rights, and minority right”. With every breath, she is changing the world.
If you would like to support Chelsea and Cystic Fibrosis Canada’s efforts in getting Orkambi covered, please sign the petition at United for CF.
You can follow Chelsea’s adventures on Instagram (@chelseacgagnon)