PatientWorthy is teaming up with CysticLife.org to spotlight some of the members in their awesome community! CysticLife.org sprang from a blog started by CF patient, Ronnie Sharpe, to track his life and exercise routine. Since then, it has grown into a vibrant social network boasting over 8,000 members who exchange tips, ideas, and encouragement. Along with providing resources like educational videos and reading materials, CysticLife.org is collaborating with the Mayo Clinic for a community-driven research project to investigate the benefits of exercise for CF patients. If you’re interested in contributing to the CysticLife Community Driven Research Fund or want to become a CysticLife member, drop by CysticLife.org today!
Cystic fibrosis has always been a part of Ronnie’s life.
Diagnosed in 1980 as an infant, he grew up with the sense of having a built-in “expiration date.” By age 29, Ronnie felt he’d outlived that date…but that didn’t mean he was thriving. His lung function was getting lower, and his body couldn’t get the oxygen it needed without the assistance of a machine. When he began coughing up blood, he was rushed to the Intensive Care Unit. Ronnie spent more than 50 days in the hospital, and his doctors told him that, beyond a lung transplant, they had exhausted their options.
Ronnie was faced with the starkest choice of his life: amend or die.
Dying was not an option, so he chose the former. He had to completely reevaluate his life and fast. As soon as he was released from the hospital, Ronnie rededicated himself to his treatments, following them more faithfully than ever before. He revamped his diet and exercised daily, lifting weights and running.
It didn’t happen overnight, but gradually, Ronnie’s lung function improved. After 18 months, it had reached 75%! Since then, he’s run countless miles and spent hours in the gym. And he’s stuck to his treatment schedule no matter what—even when camping in the middle of the forest.
Ronnie soon started blogging about his experiences.
During the time it took for his site to become popular, he discovered that many people living with CF were just hungry for a positive, central place to converse, communicate, and connect. To fill that niche, Ronnie launched CysticLife.org in 2010, and it quickly became the premier social and educational network for the CF community. As it grew, Ronnie spent more of his time traveling around the country to share his CF experiences and discuss the positive impact social media can have on healthcare.
Ronnie is justifiably proud of the online family he’s created through CysticLife.org, but he’s not content to just sit back and watch the conversation unfold. Knowing how much exercise has benefited him, he’s turned his attention to building a community-driven research project to study the clinical impact of exercise on CF. Regardless of the project’s outcome, Ronnie has already shown what happens when you combine discipline and dedication with a burning desire to help others.
Help Ronnie institute more change in the cystic fibrosis world! Donate to CysticLife’s latest research initiative. Don’t forget to share this post!