Growing up with CF was hard, but my parents helped me learn how to cope by both encouraging me to fight and allowing me space to complain.
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At 86, Marlene Pryson may be one of the oldest individuals living with cystic fibrosis. During her long life, she has dedicated many years of service to helping CF families as a CF clinic coordinator and family liaison.
From scheduling appointments to dealing with insurance, taking charge of your own care is a part of becoming an adult with cystic fibrosis. However, when the time came for me to take over these responsibilities, I realized more could be done to make the transition smoother.
It took a lot of self-advocacy — and a lot of medical testing — before I received a diagnosis of CFTR-related disorder. Fortunately, my parents supported me as I went from specialist to specialist and finally got my diagnosis.
Two doctors who worked with Dr. Warren Warwick reflect on his contribution to CF care and its lasting impact.
From a young age, I was determined that cystic fibrosis would never stop me from pursuing my dreams in the medical field. It wasn’t until I hit a road bump in pharmacy school that I realized my CF could actually give me a unique advantage.
I learned that service dogs for diabetics can be trained to detect the scent of high or low blood sugar. Could this type of training be effective for teaching my service dog to detect when I have a bacterial infection?
Working as part of a cystic fibrosis care team gives me the opportunity to provide the type of personal care I’m passionate about — I just hope my patients understand how much we are invested in their well-being.
I struggled with my health for years until I was diagnosed with CF at the age of 19. After starting treatments, my physical health improved greatly, yet the scars on my mental health remain.