MemorialCare Miller Children’s & Women’s Hospital Long Beach launched a Primary Ciliary Dyskinesia (PCD) Clinic - one of only four in the Western U.S. and the only one in Southern California. Primary ciliary dyskinesia is a rare, inherited, genetic disorder that is caused by abnormal cilia that don’t move.
Cilia are tiny, hair like structures on the cells in the body. Without properly functioning cilia, the mechanisms of the lungs in which mucus and potentially harmful foreign substances are normally removed don’t function properly. This results in germ-filled mucus staying in the ears, nose, sinuses and airways, causing inflammation and repeated infections that may affect other organs.
“Since this disease is so rare, it can be hard for parents and primary care providers to recognize and diagnose correctly,” says Bugsu Ovunc, M.D., Ph.D., lead pediatric pulmonologist for the PCD Clinic, Miller Children’s & Women’s. “People with PCD are sick from birth and experience a diminished quality of life. If left untreated, children with PCD can have lung damage early in life, while others may live into adulthood and never be diagnosed while their disease gets progressively worse.”
Only a limited number of health centers in the U.S. have extensive experience in the diagnosis and management of PCD. Because of this, Miller Children’s & Women’s treats patients from California, Arizona, Nevada, Utah and New Mexico.
“Our clinic combines the latest technology with a team of experts to diagnose children early and slow the progression of the disease,” says Dr. Ovunc.
PCD is best managed by a multi-specialty care team, and at Miller Children’s & Women’s PCD Clinic, a pediatric pulmonologist and pediatric otolaryngologist (ENT) partner in the diagnosis and treatment. Other clinical team members are available to support all aspects, both physical and emotional, of this rare disease including a medical geneticist, respiratory care practitioner, registered dietitian, social worker and more.
The PCD Clinic is part of the Children’s Pulmonary Institute at Miller Children’s & Women’s, which is ranked as a top children’s hospital in the nation for Pediatric Pulmonology & Lung Surgery by U.S. News & World Report. The Children’s Pulmonary Institute offers specialized programs that address health conditions that affect the respiratory and immune systems, such as asthma and allergies, as well as more rare diseases, including cystic fibrosis and now PCD.
Miller Children’s & Women’s has a long history of clinical excellence and research that has helped advance rare genetic diseases, like cystic fibrosis. It is one of only 92 accredited care centers that make up The Cystic Fibrosis Therapeutics Development Network, which is the largest cystic fibrosis clinical trials network in the world.
“Our goal is to not only provide our patients with the best outcomes and quality of life possible, but to lead our region in advancing care like we have done and continue to do for other rare diseases,” says Inderpal Randhawa, M.D., medical director, Children’s Pulmonary Institute.