5 Ways to Help a Child with Cystic Fibrosis Live a Longer, Healthier Life
Many years ago, a cystic fibrosis diagnosis meant that a child would not live past childhood. Left untreated, the disease is extraordinarily destructive and damaging to a person’s ability to thrive and develop. The disease’s hallmark symptom is thick, sticky mucus that builds up on the surfaces of lungs and other critical organs. The conditions of a person’s body can cause severe complications that lead to permanent damage and eventual system failure.
Today, the prognosis for cystic fibrosis is nowhere near as poor. The discovery of the cystic fibrosis transmembrane conductance regulator (CFTR) gene in 1989 gave researchers the keys to unlocking and treating the disease. Since then, additional research breakthroughs and technological improvements have increased the average life expectancy of a person with cystic fibrosis. Now, life expectancy for cystic fibrosis patients is approximately 40 years old, with more breakthroughs and treatment options constantly improving patient outlooks.
The key to harnessing these technological and therapeutic breakthroughs is in ensuring that the individual receives regular, quality care from the moment that they are diagnosed with cystic fibrosis. Preferably, the diagnosis would be reached, and treatment would be started shortly after birth.
If you have had a child or know someone recently diagnosed with cystic fibrosis, read on throughout this slideshow to learn five ways to make sure that the child is given the best opportunities to live a long, healthy, and happy life.
All babies in the United States are screened for cystic fibrosis at birth. Since the disease is a genetically inherited condition, newborn babies will begin to experience symptoms shortly after birth. It is important to note that most babies that test positive during the cystic fibrosis screening will not be diagnosed with the disease. It is estimated that 90% of all babies that test positive for the disease do not have the disease. They are only carriers and will not experience any symptoms in their lifetimes.
Once a child is given a cystic fibrosis diagnosis, treatment begins immediately. Lung development is one of the most critical aspects of childhood development, and the lungs of cystic fibrosis patients are going to be at incredibly high risk of damage or complications throughout all of childhood. This is why it is critical to receive regular care, and to communicate any and all concerns to doctors as soon as possible.
Cystic fibrosis affects more than just the body. The disease has an impact on everything from lifestyle and emotional wellbeing to time-management and the ability to take a breath. As such, you should find and have several different health care specialists on hand in order to help guide your child through both the physical and developmental struggles of growing up with cystic fibrosis.
Once a child is fully developed, and as they come of age, treatment falls out of the realm of pediatric care and into independent, adult health care. Cystic fibrosis can continue to cause complications after the lungs are fully developed, and the disease needs to be treated regularly throughout all of a person’s life. Making sure that a child is properly transitioned into their own, self-responsible health care program is critical to ensuring that there are not gaps or complications in adjusting to life as an independent, fully-capable adult.
Read on to learn more.