Madeline Poranski Takes on Patient Advocacy Role at NACFC, Former UW Research Assistant Madeline Poranski presented a poster at the 2016 North American Cystic Fibrosis Conference (NACFC) in Orlando, Florida. Madeline, who herself has cystic fibrosis (CF), had the opportunity to present at the conference through her work with Dr. Scott K. Nagle on a CF lung disease severity project. The presentation revolved around her work analyzing lung perfusion MR images and comparing them to ventilation MRI and clinical lung function measures.
“While I previously did not have a lot of experience with radiological research or medical physics,” Madeline noted, “I have always been interested in cystic fibrosis research and was thrilled to be able to contribute to this project.”
After she had been accepted as a presenter at the conference, Madeline and her mother were invited to participate in a patient/parent panel where healthcare professionals who were new to cystic fibrosis care could hear from the parents of children with CF. The panel allowed the healthcare workers to become better acquainted with the disease in how it impacts the daily life of those living with it. As the oldest patient on the panel, Madeline had a different, more positive, perspective on life with CF. The parents and patients discussed their positive and negative experiences with CF healthcare professionals and gave them advice regarding how to ensure patients receive great care while maintaining a high quality of life.
“For the first time I realized how valuable sharing my experiences and insight can be to the CF community. The healthcare professionals appreciated hearing our experiences and advice, and I think I also gave some of the other CF parents hope for their younger children to lead relatively normal lives. I never really thought I had a story to share, CF has always just been a part of my life, but I really enjoyed it and hope to have more opportunities to do so in the future.“
Currently, Madeline is contributing to a CF Foundation project focused on helping to increase adherence to treatment plans by sharing her personal experiences with CF healthcare teams and discussing their impact on her compliance to medicine and therapies. “The goal is to change the way CF teams discuss adherence with patients, so that instead of solely focusing on medications, caregivers and patients and their families can collaborate to find a treatment plan that works for both parties,” Madeline explained.