cystic fibrosis explained:
Grant Recipient, Ty
Cystic fibrosis (CF) is a genetic condition that mainly affects the lungs and digestive system. It causes the body to produce thick, sticky mucus, which can clog up the airways in the lungs and lead to breathing problems. This mucus also affects the digestive system by blocking enzymes that help break down food, which can make it harder for people with CF to absorb nutrients.
CF is caused by a mutation in a gene that controls the movement of salt and water in and out of cells. When this gene doesn’t work properly, it leads to the production of the thick mucus. It’s inherited, meaning both parents must pass on the faulty gene for a child to develop CF.
People with CF often have persistent coughing, lung infections, difficulty breathing, and issues with digestion, including malnutrition. While there's no cure, treatments like antibiotics, respiratory therapy, and special diets can help manage symptoms and improve quality of life. Early diagnosis and ongoing care can make a big difference, and life expectancy for people with CF has increased thanks to advances in treatments.
The story behind the rose:
"65 roses" is a nickname for cystic fibrosis, and it comes from the way young kids sometimes pronounce "cystic fibrosis." When trying to say it, some kids say "65 roses" instead, which sounds similar. Over time, it became a more gentle or easier way to refer to the condition, especially in fundraising and awareness campaigns. It’s a way to raise awareness for cystic fibrosis while also keeping the conversation a bit lighter and easier to talk about.
Salt + Surf
Saltwater and surfing can offer significant benefits for people with CF. The saline in saltwater helps loosen thick mucus in the lungs, making it easier to clear and reducing the risk of infections. Saltwater also has soothing effects on the respiratory system, and inhaling saline has long been used as a treatment for CF.
A 1992 study by Dr. David Orenstein and colleagues explored the benefits of surfing for people with CF. The research showed that surfing, an aerobic activity, improved lung function by promoting mucus clearance and increasing cardiovascular fitness. The physical activity and exposure to saltwater and fresh air were found to support respiratory health and improve overall well-being.
Beyond lung function, surfing provided psychological benefits, boosting self-esteem and offering a sense of freedom. This combination of physical exercise, social interaction, and saltwater exposure makes surfing a beneficial activity for CF patients, improving both mental and physical health.
The future is bright.
The future for people with cystic fibrosis (CF) is promising, thanks to advances in treatment and research. New medications like CFTR modulators (e.g., Trikafta) are improving lung function and reducing symptoms, even in severe cases. Researchers are also exploring gene therapy, which could fix the genetic cause of CF. Personalized medicine is making treatments more tailored to individual needs, improving outcomes. With better disease management and ongoing breakthroughs, life expectancy for people with CF is increasing, and the hope is to eventually find a cure.