Educational event targets young adults with cystic fibrosis

| July 14, 2017 | 0 Comments

Dr. Christine Gould (left), Pediatric Pulmonologist and Director of the Cystic Fibrosis Center at Tripler Army Medical Center (TAMC), Dr. Jeanne Hoffman (center), TAMC Clinical Pediatric Psychologist, and Dr. Anthony Recupero (right), TAMC Pediatric Endocrinologist, draw awareness to adolescents living with cystic fibrosis and the transition to adulthood during the 2017 Hawaii Cystic Fibrosis Family Education Day hosted by the TAMC Cystic Fibrosis Center on June 30.

Story and photo by
Leanne Thomas
Tripler Army Medical Center Public Affairs
HONOLULU — Tripler Army Medical Center hosted the sixth annual Hawaii Cystic Fibrosis Education Day at the Hale Koa Hotel, recently.

The event, aimed at educating Tripler’s cystic fibrosis families, brought the community together with integral members of the cystic fibrosis care team.

In past years, care teams focused predominantly on providing education to the parents of children diagnosed with cystic fibrosis. This year, the Education Day conveyed awareness to new populaces – adolescents and adults living with cystic fibrosis.

“In 2014, cystic fibrosis transitioned from a primarily pediatric disease to an adult disease because of an incredible amount of (medical) advances over the past few years,” said Dr. Christine Gould, pediatric pulmonologist and director of the Cystic Fibrosis Center at TAMC. “Better care and interventions have resulted in improvements to lung health.”

According to the cystic fibrosis patient registry, in 2014, over 650 people with the disease were between the ages of 18-24 and transitioned their care to an adult program.

“The future is brighter than ever for people living with cystic fibrosis,” Gould said. “More than 50 percent of cystic fibrosis patients are 18 years or older, 69 percent are in school or working, more than 40 percent are married or living with a partner and the median survival age for patients living with cystic fibrosis is 42 years.”

As cystic fibrosis mortality rates change with improvements to care, gaps in transfer and transition-related clinical care have been studied and identified. Alongside cystic fibrosis experts across the country, TAMC facilitates a shared understanding that more may need to be done to assist with the transition to adulthood.

Recognizing that not all cystic fibrosis patients are children, Tripler added a new member to the cystic fibrosis team, Dr. Jordanna Hostler. She specializes in adult pulmonary, critical care and sleep medicine, and offers a refined approach to delivering health care to the young adults living with cystic fibrosis at TAMC.

Dr. Anthony Recupero, a pediatric endocrinologist at TAMC, delivered a presentation regarding puberty and fertility in cystic fibrosis patients.

“With good nutrition, normal growth spurts occur, which support normal developments in puberty,” he said.

To further draw awareness, an adult cystic fibrosis patient and his parents shared their personal story to inspire other families.

With TAMC currently the only accredited cystic fibrosis center in the Hawaii, the symposium also served as an opportunity to share developments within the community by collaborating with pediatric pulmonologists from Kapiolani Medical Center.

“With the majority of cystic fibrosis patients now being over the age of 18, empowering our patients to manage their condition and readying them for a healthy future is of utmost importance,” said Gould.

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For more details about cystic fibrosis, visit the Cystic Fibrosis Foundation website at www.cff.org.

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