Since May is National Cystic Fibrosis (CF) Awareness Month, I thought I’d share a personal story in order to spread the word about this terrible disease and the research being done to help those who suffer from it.
Before my cousin was brought home from the hospital 18 years ago, her parents, my parents and our grandparents sat on the floor around the coffee table paralyzed with feelings of helplessness and desperation. The shock they had just encountered, learning that the newest addition to their family had CF, was overwhelming. The news they had received from the doctors after a sweat test would change all of our lives from that point on.
CF is a genetic disease that, at the time my cousin was born, left children with a life expectancy of 18. CF causes the mucus in the lungs to thicken and build up, creating a state of permanent bronchitis-like ailments. The body of a CF patient is unable to digest certain enzymes and nutrients from food so an amalgam of pills is required to prevent starvation. When a child with CF coughs, the sound that comes out of them is so loud and substantial, once you hear it, it’s quite likely you will never forget.
Frank Deford, whose daughter Alex passed away at the age of 8, two years before my cousin was born, had this to say in his book, “Alex: the Life of a Child”: “Cystic fibrosis kills children, and painfully. How much worse could a thing be that kills children? But cystic fibrosis is worse. It can threaten the whole family in many ways; destroy the hearts and the faith of all its members.”
In 1989, the gene that carries CF was discovered, leading to tremendous advances in the care of CF patients. With this knowledge, scientists can focus their attention to gene therapy as a course of action to find a cure for CF.
Daily treatments include pounding on the back and chest of CF patients to break up the mucus in their lungs and breathing treatments where antibiotics are aerosolized and breathed into the lungs along with inhalers and nasal sprays. Recently, a mechanical vest was invented to ease the pounding treatments a little.
Not every CF patient suffers from the same symptoms. Some have more problems with their lungs while some have more problems with their digestive systems. The life expectancy has recently been raised to 32, although young children still die from it every year. When my cousin was just 9 years old, she experienced the loss of one of our friends who was 12 to CF. That prompted her to ask her dad if she was going to die too, which is when she learned about the seriousness of her disease.
Today, after nine sinus surgeries and another surgery to clear up a problem with her esophagus from too much coughing, my cousin is still alive with relatively healthy lungs at 18-and-a-half-years old. She is enjoying her first year of college and speaks at CF events doing what she can to raise awareness. She boasts that she can now swallow 14 pills at once, making swallowing her enzymes with meals easier, but certainly not anywhere near pleasant.
National CF Awareness Month was introduced last year for the first time, giving a boost to the volunteers and fund-raisers all across the country. I am confident that a cure will be discovered in my lifetime but the CF Foundation needs all the help it can get to find a cure in my cousin’s lifetime.
With an end so close on the horizon, I hope that more people will get excited about curing CF and my cousin can benefit from all this research. In the meantime, I’ll be sporting my now-trendy, blue “Breathe” wristband. They’re all the rage, you should get one too.
Julie Isen ([email protected]) is a junior majoring in political science. You can find out more about CF at www.CFF.org.
