14-Year-Old with Cystic Fibrosis Doesn’t Say ‘Why Me’, Says ‘Why Not Me’?
Photo source: ABC Radio Adelaide
Because cystic fibrosis affects nearly the entire body, all too many people with this genetic disorder think about their symptoms and outlook then fall into a pit of despair. Not everyone. And certainly not Mae Johnson, a 14 year old girl from Adelaide, Australia.
In fact, this enterprising teenager is using her cystic fibrosis to motivate herself and others. She’s fighting back against the symptoms of cystic fibrosis and in the process is raising awareness of the disorder.
A teen with a motivational mission
Mae Johnson has cystic fibrosis. To manage the symptoms, she takes about thirty pills and tablets every day. These include vitamins and enzymes as well as antibiotics and steroids.
Despite this, she is more active than a lot of other teenagers. She is a marathon runner, and just recently ran in the Trailblazer By The Sea fundraising run by the Rotary Club Adelaide, along with the Surf Life Saving Association of South Australia.
Her section was a fourteen kilometer stretch. Cystic fibrosis can make running difficult; Mae knew she would have difficulties even before she started the marathon.
“I’m probably going to struggle a lot, but I am going to just keep pushing through,” she said. “I’m just going to wing it... we’ll go glass-half-full, push through and [I’ll] pace myself.”
Push through she did. Out of 30 runners in the fourteen kilometer event she came in 24th, with a time of two hours, one minute, and fifteen seconds. A respectable time for someone who says that “I can’t breathe when I run, so I am always kind of left off to the side. It feels like my lungs are on fire.”
Her mother, Judy, was right behind her. Olivia, her sister, ran as well to help support Mae.
But just finishing the marathon was not her only goal.
Trailblazer By The Sea allows runners to set up personal campaign pages. Mae Johnson set up hers, called it “Fight with Mae,” and set a goal of $2,500.
The money raised was to go to a foundation called Cure 4 Cystic Fibrosis. She achieved that goal admirably, raising over $3,100 for the cause!
As of the time of this writing, donations are still being accepted, so if you find her goal to be a noble one, you can contribute.
Cure 4 Cystic Fibrosis Foundation
There is not yet a cure for cystic fibrosis. Cure4CF, however, wants to change that. They are a charitable foundation that not only does outreach about cystic fibrosis but also works with genetic researchers directly.
Unlike some charities, a donation to Cure4CF directly impacts research. They also have comparatively low overhead. They team up with community members and work with other entities, which means that they pay very little for fundraising. So they can use donated money for research.
Cure4CF calls their community fundraisers Everyday Heroes. They have avenues which you, like Mae Johnson, can raise awareness of cystic fibrosis and raise money to assist the research.
They have even partnered with a winery to produce a Shiraz Cabernet wine called Climbing Rose, the sales of which support the Cure4CF Foundation. You will need to have a delivery address in Adelaide, though.
Cure4CF’s genetic cure
The research in which Cure4CF is investing is a method of gene transfer. Because cystic fibrosis is dependent on mutations in the CFTR gene, the ability to completely replace that gene with a healthy alternative would be required to completely cure cystic fibrosis.
Other treatment methods are no-doubt beneficial for patients suffering from cystic fibrosis, but because it is a genetic disorder, a genetic treatment will be required for an actual cure. Anything else just treats the symptoms which, while a very good thing, is not the same.
Their chosen method of gene therapy, the method by which they are looking to replace or augment the mutated CFTR gene, is by using a modified virus.
Viruses are adept at spreading genetic information; this is why viral infections are so virulent. But much like how rocket engines were originally used to cause destruction but now are used to help humanity by putting satellites into orbit, viruses have the potential be turned toward a beneficial cause.
Cure4CF’s partner research team, which is also based in Adelaide, is working on modifying a virus to safely and efficiently bring a healthy CFTR gene into the body’s airways. Once there the new gene will theoretically supplant the old, malfunctioning gene, freeing up your ability to breathe.
Their goal may still be a ways off. But with help from people like Mae Johnson, it is inching closer.
Cystic fibrosis, running, and other exercise
Currently, someone with cystic fibrosis can expect an average life expectancy of thirty eight years. Mae Johnson will likely see herself grow older than that, as exercise is beneficial for someone with cystic fibrosis.
This disorder does not make exercise easy. Your lungs are very important in seeing you through a long run or a weight lifting session. The impaired lung function from cystic fibrosis makes that difficult.
But people with cystic fibrosis still see improved lung function from exercise. The physical activity loosens up the mucus, which can make breathing difficult in the moment as that gunk needs to get cleared out of the airways, but makes breathing easier later.
The physical activity also trains the lungs to more efficiently take in air. Exercise trains your body to more efficiently use the oxygen it has taken in, and strengthening the muscles of the upper body also strengthens the muscles used for breathing.
So exercise specifically helps partially counteract the damage cystic fibrosis does to your ability to breathe. What about the rest of the body?
Cystic fibrosis has a tendency to harm the development of people’s bodies, especially when they are teens and pre-teens. Consistent exercise encourages the body to strengthen and grow, which ameliorates some of the deteriorating effects from cystic fibrosis.
Exercise also gives goals one can strive for, a way to help manage the symptoms of cystic fibrosis. When the symptoms seem overwhelming, having such a goal in mind can help you make it through the difficult time.
Other cystic fibrosis “sufferers” like Mae Johnson
Ms. Johnson is not the only person who took their cystic fibrosis diagnosis and turned it into motivation. Australia has a few other individuals who, from a young age, have risen above the genetic disorder.
Ella Sinclair won a scholarship to the New York Film Academy at the age of thirteen, the youngest person to win that scholarship. She started acting at eleven, and started singing at six to help with cystic fibrosis management. Singing served as both a distraction and physiotherapy.
Jack Dyson was diagnosed with cystic fibrosis when he was eleven days old. Now that he is twenty, he has the goal of being a bodybuilder similar to his hero, Arnold Schwarzenegger. Working out became his way of managing the symptoms and difficulties of cystic fibrosis.
He has started sharing his journey with other people and has an account on YouTube where he covers his life with cystic fibrosis as well as gives workout advice. His YouTube name is Iron Lungs.
Living with cystic fibrosis does not mean that your life goals have to end in defeat. Mae Johnson has shown how you can achieve victory despite, and even because of, cystic fibrosis.
References
http://www.trailblazerbythesea.com.au/
