Cystic fibrosis is a genetic disease that affects nearly 30,000 people in the United States. Although CF has lifelong and life limiting consequences, two Children's families won't let the disease stop their dreams.
The Nebraska Regional Cystic Fibrosis Center
The Nebraska Regional Cystic Fibrosis (CF) Center, with clinics located at both Children's Hospital & Medical Center and the University of Nebraska Medical Center (UNMC), is the only Cystic Fibrosis Foundation accredited center in the region. It is one of the oldest cystic fibrosis centers in the country and was the first accredited center west of the Mississippi River. The Children's and UNMC clinics follow approximately 200 pediatric and adolescent cystic fibrosis patients annually. Children's pulmonologist John Colombo, M.D., is medical director of the Cystic Fibrosis Center.
The Nebraska Regional Cystic Fibrosis Center pediatric program ranks among the top 10 of 120 centers in the country for pulmonary function outcomes and among the top 15 percent in nutritional outcomes. This data is collected and reported by the Cystic Fibrosis Foundation.
The center provides diagnosis and treatment for both inpatients and outpatients with pediatric cystic fibrosis utilizing a multidisciplinary approach of specialized care provided by pulmonologists, nutritionists, respiratory therapists, social workers, coordinators and research technologists. All staff, doctors and caregivers have extensive training and experience with cystic fibrosis in children. When appropriate, endocrinologists, gastroenterologists, ear, nose and throat and pediatric surgeons with expertise in cystic fibrosis are also consulted.
What is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that attacks the lungs and digestive system of about 30,000 children and adults in the United States annually. The condition is caused by a defective gene and its protein product that causes the body to produce very thick, sticky mucus that clogs the lungs and can lead to life-threatening lung infections. The mucus can also obstruct the pancreas and prevent natural enzymes from helping the body break down and absorb food.
In the 1950s, most children with cystic fibrosis died at a very young age. However, due to advances in research and medical treatments, the quality of life for children and adults with cystic fibrosis has been greatly enhanced and many of these individuals are now living into their 30s, 40s and beyond.
The staff at Children's has extensive training and experience in the treatment and management of cystic fibrosis. Since cystic fibrosis is a chronic illness, your child will need to be followed closely and monitored by our specially trained doctors throughout his or her lifetime.
Treatment for cystic fibrosis involves a customized multidisciplinary team approach. This includes antibiotics, inhaled medications, nutritional management and social/psychological support. Our doctors and clinicians will work closely with you and your child to educate you about the disease and to develop a treatment plan that will allow your child to live as normal a life as possible. The center is also actively involved in research to find better treatments for cystic fibrosis. You will have the opportunity to participate in clinical studies if you choose.