Tripler's Cystic Fibrosis Center hosts educational, social event for families
June 7, 2012
HONOLULU -- Members of the military's tight-knit cystic fibrosis community gathered at the Hale Koa hotel in Waikiki, here, May 25, for Cystic Fibrosis Family Education Day.
Currently, there are 20 families living on Oahu with a family member with the life-threatening genetic disease.
According to the Cystic Fibrosis Foundation, cystic fibrosis causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. The mucus allows bacteria to get stuck in the airways, which can lead to inflammation and infections often resulting in permanent lung damage.
Across the Pacific, if a child stationed in Guam, Japan or Korea is suspected to have cystic fibrosis, they're brought to Hawaii to get tested. If the patient does have CF, the family is most often relocated to a duty station that has CF care options available.
As the only accredited Cystic Fibrosis Center in Hawaii, Tripler Army Medical Center conducts sweat tests, which has been considered the "gold standard" for diagnosing cystic fibrosis for more than 50 years. Consultations are also provided for non-beneficiaries via the Pacific Island Health Care Program.
"Our idea was to invite families and patients to talk about topics that are evolving in cystic fibrosis, or topics that are specific to our center," explained Lt. Col. Jane Gross, pediatric pulmonologist and director of the Cystic Fibrosis Center, Tripler Army Medical Center. "Basically, we wanted to provide a forum for dissemination of information to the group and the public."
Cystic Fibrosis Centers are nationally recognized care facilities that must meet strict guidelines to receive the Cystic Fibrosis Foundation's "stamp of approval" every year. Care center staff is comprised of specialists, including doctors, nurses, respiratory and physical therapists, dietitians and social workers. Working together with each CF patient, each center's staff strives to meet every patient's specific needs to keep them as healthy as possible.
Tripler's Cystic Fibrosis Center is the only one in the state.
Patients, families, cystic fibrosis physicians and care providers working at Tripler's CF Center and other medical facilities on island were able to attend presentations by four guest speakers.
Dr. Felix Ratjen, division chief of respiratory medicine at the Hospital for Sick Children in Toronto, spoke about new medical treatments in cystic fibrosis that will be soon on the market.
Ratjen, a world renowned CF physician, is also a senior scientist at the Research Institute of the Hospital for Sick Children and a professor in pediatrics at the University of Toronto.
Anabel Stenzel and Isabel Stenzel Byrnes, identical twin sisters living with CF, spoke about their personal experiences growing up with and living well with CF. Together, they published a memoir, "The Power of Two: A Twin Triumph over Cystic Fibrosis," which inspired the creation of a documentary film (of the same name) that premiered internationally in 2011.
"We were told we would live until we were 10 years old," Anabel said. "Now we're 40, thanks to medical advances, a lot of perseverance in the medical world and being cared for at places like the Cystic Fibrosis Center here.
"We're here today as authors, subjects of a document film (but mostly as) patient advocates for living well with a
Currently residing in California, Anabel is a genetic counselor at Stanford University Medical Center, and Isabel works at Lucile Packard Children's Hospital in social work. They are co-chairs for the Heroes of Hope Living with Cystic Fibrosis Patient Recognition Program, and are active volunteers in the cystic fibrosis community.
David Johnston, an epidemiologist with the Hawaii State Department of Health, gave the last presentation of the day on the Mycobacterium abscessus outbreak Hawaii experienced in 2010. The bacteria can cause a very progressive infection resulting in fast deterioration of lung function, which can be fatal for CF patients.
Though the event was intended for patients with cystic fibrosis and their families, several patients weren't allowed to attend CF Family Education Day in person.
"Per the Cystic Fibrosis Foundation, to maintain accredited, we have to abide by strict infection control measures," Gross explained. "Even though they can be frustrating or hard to maintain, it's important to do so because failure to do so can impact the health of our patients."
The guidelines limit access to certain patients. For instance, CF patients who are colonized by certain kinds of bacteria cannot be around any other CF patients because the probability of transmitting the bacteria and causing an infection is greatly increased.
Those unable to attend Family Education Day weren't left in the dark though.
"To make it fair for everyone, regardless of a patient's clinical condition, we had the entire conference recorded," Gross said. "This way, the updates and information presented by the guest speakers is universally available to our population."