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Cystic fibrosis

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I always tell parents that despite the fact that their baby has cystic fibrosis, they still have an otherwise normal baby. While cystic fibrosis can affect her lungs and her growth and her weight, it doesn?t affect how she thinks: She can go to college and do all sorts of brilliant things.

Debra Boyer, MD, associate medical director, Pediatric Lung Transplant Program

The outlook for a child with cystic fibrosis (CF) has never looked better. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have greatly improved the lives of people with CF; many children with the condition can expect to live into their 40s and beyond.

Cystic Fibrosis
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  • Cystic fibrosis (CF) is a common hereditary (inherited) chronic disease that can affect multiple parts of your child’s body -– most commonly her lungs and digestive system.
     
  • The goals of treatment are to ease severity of your child’s symptoms and slow the progression of the disease.
     
  • At the present time, there is no cure for CF, but with medical and psychosocial support, many children and adolescents with CF can cope well and lead a productive life.

How Children’s Hospital Boston approaches cystic fibrosis

The  Cystic Fibrosis Center at Children's is one of the oldest and largest cystic fibrosis centers in the United States. Caring for more than 500 children and adults each year, we provide services ranging from evaluation and diagnosis to treatment and patient education.

Our center is staffed by an experienced, multidisciplinary team of clinicians, all of whom have specialized training in the care of patients with cystic fibrosis. This approach ensures a thoughtful discussion of every treatment possibility in every case. Your child is in excellent hands with us.

Long history of treating CF
Children’s Cystic Fibrosis Center was founded by Harry Shwachman, M.D., one of the earliest physician investigators to help characterize the disorder. In 1955, he helped to establish the Cystic Fibrosis Foundation.

 

 Transitioning from pediatric to adult care
 More than 9 million children in the United States are living with a chronic illness. Every year, 500,000 of these children turn 18. As they join their fellow adolescents in struggling to achieve optimal independence, they also face a serious issue they may not be prepared for: the transition of their medical care. Read Children’s tips for helping kids – and their families – make this key transition.

Cystic Fibrosis: Reviewed by Debra Boyer, MD
© Children’s Hospital Boston, 2011

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