When my family friend’s new girlfriend came to meet us, she made the best impression with her positive attitude and general ease in interacting with a large (and probably overwhelming) group of people. It is more than apparent that they both are equally in love with one another. They share a love of travel and sense of adventure. He’s in to organic, locally sourced culinary arts, and she’s into healthy living. They’re a great match.
One day during her visit, she realized she forgot some of her medicine so we had to call in a last-minute refill at the local pharmacy. When she came back with her prescription, my friend’s father casually inquired, “You have asthma?” She said “No, I actually have cystic fibrosis.”
Cue a lot of questions coming from my friend’s parents because being from a small town, coming across rare diseases is, well… rare. The questions ranged from “Does it hurt?” to “How are you able to still travel so much?”
What Should I Know About Cystic Fibrosis?
While I don’t aim to answer the personal questions about CF in this post, I think that there are at least four things everyone should know about CF, even if they’ve never met or known anyone with it. The more educated the general population is on this rare condition, the better equipped we are to fight for better treatment and outcomes.
1- CF is genetic, so people are born with it. It occurs when both parents carry a CF gene and the child inherits the mutated gene from both parents. Though two parents may have the CF gene, their children may not all have CF. A child could just inherit one CF gene and thus be a carrier. One child may not inherit either CF gene so are unaffected. There is a DNA test to see if someone is a carrier, but it’s not 100% accurate if there is no family history of the condition. A great visual representation of this is here.
2- People without CF generally produce thin and slippery mucus and sweat. The glands in those with CF produce thick and sticky mucus and sweat. This can lead to frequent infections, difficulty breathing, and difficult digesting food.
3- The current average life expectancy for someone born with CF between 2013 and 2017 is 44 years old. To those born 30 years ago, advancements have come a long way to increase that average age. But there is so much more to the story than that number. For example, half of those with CF died before they were 31, according to the 2016 Registry. Not to mention the quality of life issue at hand, including but not limited to time-consuming treatments, hospitalizations, and other complications. Check out more info on this here.
4- There is still no cure for CF, but there is treatment. Compliance with treatments is really important, but outcomes vary. There are multiple types of CF mutations, so not all treatments work for everyone with CF. There have been some major breakthrough treatments recently, that have not only improved the quality of life of those living with CF, but the longevity. However, they don’t treat all mutations, and everyone’s experience is different.
While there is so much more to know about this condition, this is a start to better understanding it for those unfamiliar. And while it is serious, know that with CF, it is possible to go to school, be active in sports (exercise therapy!) and achieve lifelong dreams. To find out more about daily life and CF, click here.
