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Charlotte Ravenelle, 20, and Haley Stempeck, 18, are young, active adults full of potential. Charlotte’s passion is music – she sings as part of her church worship team and enjoys playing instruments in her free time. Haley is a self-proclaimed book worm who recently graduated from Reed High School with honors. These two young women share a common trait. They are living with Cystic Fibrosis (CF), a chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States.
Ravenelle and Stempeck are patients at the newly established cystic fibrosis program at Renown Children’s Hospital. The first of its kind in the region, this program is a partnership between Renown Children’s Hospital, University of Nevada School of Medicine and the Cystic Fibrosis Center at Stanford , located at Lucile Packard Children’s Hospital. Approved for accreditation as an Affiliate Program by the Cystic Fibrosis Foundation Center Committee, Renown Children’s Hospital became one of 55 affiliate programs nationwide. The CF Center at Stanford, to which Renown is affiliated, is one of 110 care centers accredited by the Cystic Fibrosis Foundation.
This relationship allows patients in northern Nevada to join more than 25 clinical trials with Stanford University serving as a referral center.
As part of the program, all patients are seen by a team of specialists as recommended by the Cystic Fibrosis Foundation. Team members include Sonia Budhecha, M.D., a board-certified pulmonologist and director of the cystic fibrosis program; Anthony Floreani, M.D., co-director of the children’s CF program and director of the adult program; Kathy Peele, certified pediatric nurse practitioner and program coordinator; Heidi Shoemaker, registered dietician; Sandy Ollivier, respiratory therapist and Dannielle Adler, social worker. These individuals have extensive experience in pediatrics as well as expertise that comes with considerable CF training. Dr. Jasmine Dhindsa, an infectious disease specialist with CF experience, serves as the infectious disease consultant for the center.
“I love having everything available under one roof,” said Stempeck, who was first diagnosed with CF when she was 13. “Dr. B is the best and I can tell a lot gets done here. Before this became available, I never saw a respiratory therapist or a nutritionist. I can tell they’re really looking out for me.”
“This affiliation offers local CF patients a tremendous opportunity to get the comprehensive care they need by bringing a team of local and national experts together to offer patients the latest therapies and promising new treatments,” said Dr. Budhecha, the program’s director. “The affiliation with Stanford University provides our patients immediate access to all of their clinical trials, ensuring leading-edge treatment options. The CF Center at Stanford is the largest such center on the West Coast and participates in more research trials than any other center near to us. It is also the only pediatric lung transplant center in the area. ”
As part of the affiliation, Dr. Carlos Milla, director of the Stanford Cystic Fibrosis Center, will collaborate with the Renown cystic fibrosis team of specialists and make routine site visits to Renown Children’s Hospital. His visits will help ensure the care provided continues to meet the rigorous standards established by the Cystic Fibrosis Foundation to maintain accreditation as an affiliated program.
Cystic Fibrosis is one of the most common types of chronic lung disease in children and young adults. CF is also the most common, deadly, inherited disorder affecting Caucasians in the United States.
In addition to the children’s cystic fibrosis program, Dr. Anthony Floreani, an adult pulmonologist with Pulmonary Medicine Associates, is directing an adult CF program. Similar to the children’s program, this will allow adults living with CF to receive comprehensive treatment in one facility. Dr. Floreani has extensive CF experience from the University of Nebraska where he previously practiced. The specialized team of experts will work with both pediatric and adult patients, resulting in uninterrupted care and treatment into adulthood.
Ravanelle and Stempeck will continue to receive their treatment through the new CF program at Renown. Both patients are what Dr. Budhecha calls “model patients.” They maintain their health by adhering to rigorous daily treatments that include multiple breathing treatments, taking antibiotics and vitamins, using inhalers and wearing an airway treatment vest.
“It’s hard to make time for all the treatments sometimes, but you know if you don’t do them that you could get sick,” said Ravenelle. “Having CF makes you feel more scared than normal that you might get sick.”
“We would like all of our patients to be seen at least quarterly by the CF team at Renown Children’s Hospital,” said Budhecha. “This way we can ensure the course of treatment they are receiving is right for them.”
All children’s appointments can be made through Dr.Budhecha’s clinic at University Health System at 775-784-6522 and all adult patients can be made through Pulmonary Medicine Associates at 775-329-9010. For more information about Renown Children’s Hospital visit renown.org/children.
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