According to the Cystic Fibrosis Foundation, about 30,000 people are living with CF in the US and just about 1,000 new cases are diagnosed each year.
Cystic Fibrosis (CF) is a chronic inherited disease. Decline in lung function that causes severe breathing problems usually begins in early childhood, around the age of 2. Its symptoms and severity vary from person to person and over time affect not only the lungs, but also the pancreas, liver, intestines, sinuses, and sex organs. For more information about CF visit The National Heart, Lung and Blood Institute.
Today, there are seven marketed drugs indicated for the treatment of CF.
They say that as treatments improve, so does life expectancy for those living with CF. Well, the CF community wants to know if, and how exercise can be a part of their treatment plan. CysticLife is working to give them an answer.
Patient Worthy is supporting CysticLife in their community driven research project.
We’ve teamed up with the one and only Ronnie Sharpe, the founder of CysticLife to ” provide enough information to support the practice of writing specific exercise prescriptions to cystic fibrosis patients. ”
Exercise prescriptions? Yes, really. I know, we were intrigued too!
Ronnie and his team are looking to hold a study to figure out how much of an exercise load it takes to achieve clinical impact. Research partners (participants) will be given wearable devices to track their daily exercise intensity, duration and mode. The clinical impact of exercise on various groups based on age, clinical status, gender and exercise type (as well as other naturally emerging groups) will be observed by an Exercise Research Committee (ERC). The study’s Primary Investigator is from the Mayo Clinic. Her name is Courtney, and she is awesome!
Stay tuned for upcoming Patient Worthy interviews from CysticLife Community members, the ERC, and people with a passion for the impact of exercise on cystic fibrosis.
Living with Cystic Fibrosis? Join Cystic Life’s Community here at https://cysticlife.org/.
