Honoring Cystic Fibrosis Awareness Month
Raising Awareness and Celebrating Resilience
Welcome to Cystic Fibrosis Awareness Month! Every May, we come together to shine a spotlight on Cystic Fibrosis (CF)—celebrating the incredible individuals living with this condition and the remarkable strides we've made in research and treatment.
Did you know CF affects about 70,000 people worldwide? In the U.S. alone, around 30,000 individuals face the daily challenges of CF, a genetic condition that primarily impacts the lungs and digestive system.
________________________________________
What is Cystic Fibrosis?
CF is a genetic disorder caused by mutations in the CFTR gene, which disrupts the salt and water balance in cells. The result? Thick, sticky mucus that clogs the lungs and damages other organs. This stubborn mucus leads to chronic lung infections and makes digesting food a serious challenge.
In the past, CF often meant a shortened life expectancy, with many not surviving beyond their teens. But guess what? Thanks to groundbreaking medical advances, people with CF now have the chance to live much longer, fuller lives. The median age of death has climbed from 26 years in 2008 to 66 years in 2022. That’s incredible progress!
________________________________________
Breathing Easy? Not Quite
Imagine coughing and wheezing every day. The thick mucus in the lungs blocks airways, making it hard to breathe and creating the perfect environment for harmful bacteria. Over time, this can lead to serious lung damage and even respiratory failure.
________________________________________
Digestive Dilemmas
CF doesn’t stop at the lungs. It also affects the digestive system. When mucus blocks the pancreas, it prevents digestive enzymes from reaching the intestines. This results in malnutrition, poor growth, and weight issues. Many people with CF rely on enzyme supplements and high-calorie diets to stay healthy.
________________________________________
The Power of Early Detection and Treatment
Early diagnosis can be a game-changer. Thanks to newborn screening programs, we can now detect CF early and begin treatment right away. Care plans often include airway clearance therapy, inhaled medications, enzyme replacement, and more to manage symptoms and prevent complications.
________________________________________
Cool Advances in CF Research
Research is one of our greatest weapons against CF. One major breakthrough? CFTR modulators—drugs that help the faulty CFTR protein function more effectively. These therapies have transformed care and improved quality of life for many people with CF.
Let’s goooo, Trikafta!
________________________________________
Your Support Matters!
Living with CF is tough, but with resilience and a strong community, individuals can thrive. Organizations like the Cystic Fibrosis Foundation (CFF) and the European Cystic Fibrosis Society (ECFS) provide vital resources, support, and advocacy.
________________________________________
Get Involved This May!
Want to make an impact? Here are some fun and meaningful ways to support the CF community:
• Raise Awareness: Share CF facts on social media, participate in awareness campaigns, and educate your friends and family.
• Fundraise: Join or host events like walks, runs, or virtual fundraisers to support research.
• Volunteer: Offer your time and talents to CF organizations or events.
• Advocate: Speak up for policies that improve care and fund research.
• Support Families: A kind word or helpful gesture goes a long way for families affected by CF.
________________________________________
As a Physical Therapist, working with kids and teens with CF has been one of the greatest honors of my life. Sadly, many of them passed away just as CFTR modulator drugs were becoming available. They taught me so much about resilience, hope, and living life to the fullest. Every May, I pause to remember them—and the laughter, courage, and joy we shared.
________________________________________
What is your experience with CF? What are your stories? We want to hear about it ! Email us at: tinywellnesscollective@gmail.com
