Cystic fibrosis is a genetic disorder that greatly affects the lungs and digestive systems. There is no cure for cystic fibrosis, however, survival from cystic fibrosis has greatly improved over the years. The current life expectancy for cystic fibrosis patients born between 2017 and 2021 is 53 years, a substantial increase from over a decade ago when the life expectancy was 38 years. With ongoing treatments the life expectancy is expected to improve even more towards the normal range.
The increase in life expectancy for people with cystic fibrosis is due to improved medical treatments and care. Groundbreaking advances in medication, antibiotics, and respiratory therapies have helped to manage symptoms and slow and eventually halt the progression of the disease.
The Cystic Fibrosis Center at MemorialCare Miller Children’s & Women’s Hospital Long Beach is recognized for its commitment to providing comprehensive, high-quality care for patients, and has the largest number of ongoing active cystic fibrosis clinical trials available to patients in Southern California.
Miller Children’s & Women’s Hospital uses a team approach to treat cystic fibrosis. Many of the care team members have dedicated their careers to treating and improving the lives of children and young adults with cystic fibrosis. The care team nurtures a relationship with patients of the Cystic Fibrosis Center to help reduce anxiety for patients and families making their transition from hospitalization to follow-up care. The center is accredited by the Cystic Fibrosis Foundation and follows their clinical guidelines to offer the best care, treatments and support.
“The Cystic Fibrosis Center offers diagnostic testing, such as sweat tests, genetic tests, throat cultures, sputum cultures, blood work, chest x-rays, and a wide range of diagnostic pulmonary function tests, to ensure that children and young adults have access to timely care, proper treatments to ease symptoms, reduce complications, and improve quality of life,” says Cyrus Shahriary, M.D., associate director, Cystic Fibrosis Center, MemorialCare Miller Children’s & Women’s Hospital Long Beach.
The medical record system within the Cystic Fibrosis Center allows the care team to show the patients their graphs from each checkup and discuss their progress, while noting specific areas where the patient can improve. The Cystic Fibrosis Center ensures patients can grow into independent, productive adults, and live a long quality life.
“The patients admitted at the Cystic Fibrosis Center are documented over their entire time at Miller Children’s & Women’s, which can be for several years,” added Dr. Shahriary. “Our hospital holds records through a complex system where data can carry through to other MemorialCare hospitals and clinics, so patients can continue to receive our excellent care no matter where they are.”