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CF Patient Looks Forward to a Full Life

  • June 1, 2007
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It was different when Crystal Higgins was born. When Higgins was diagnosed at 16 months with cystic fibrosis (CF), her parents were told she probably wouldn''t live past high school age. Few effective treatments existed for CF and few patients survived into adulthood.

But research and treatment advances soon converged to give Higgins and other CF patients a future to look forward to.

Abnormally thick mucus clogs CF patients'' airways, acting as a breeding ground for infection in the lungs. Repeated lung infections resulting in progressive lung destruction and obstructive lung disease cause most CF deaths. Over the past 30 years, the developments of specialized CF centers with multidisciplinary care have dramatically improved survival for people with CF.

Higgins'' lungs remained clear throughout her childhood in southeastern Missouri. In fact, other than some digestive issues easily treated with enzymes, she was relatively symptom free until high school, when she developed a mild cough. Higgins'' parents and doctors were proactive, making sure she saw a specialist regularly and had access to CF advances.

She has lived a normal life – graduating from college, getting married and going to work as a computer programmer. She transitioned from the pediatric specialist to the adult cystic fibrosis program at Barnes-Jewish Hospital, under the direction of Washington University pulmonologist Daniel Rosenbluth, MD.

The program uses a multidisciplinary approach that brings together a specialized team including nurses, dietitians, social workers and counselors. New and investigational drugs also are available through clinical trials. If necessary, a patient can be referred for transplant at Barnes-Jewish, one of the leading centers in the world for lung transplantation in CF patients.

Median survival for people with CF, now about age 37, has risen exponentially since Higgins was diagnosed. Higgins, 34, plans to reach and exceed the current milestone.

Although she has always been aware that CF could be fatal, "I always thought I had a future," she says.

Now, Higgins and her husband Brian are looking forward to moving to a farm, building their dream home and raising their two young children.

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