In the United States, around 35,000 people live with Cystic Fibrosis (CF). The Centers for Disease Control and Prevention (CDC) explains the condition itself is genetic and affects a person’s ability to breath and digest. All throughout May, communities touched by CF unite in celebration of Cystic Fibrosis Awareness Month to learn, share personal stories, and ultimately advocate towards a cure for all.
What is Cystic Fibrosis (CF)?
People with CF are found to have a genetic mutation caused by the Cystic Fibrosis Transmembrane conductance Regulator (CFTR) gene. Cystic fibrosis is notorious for blocking a person’s lung and digestive system due to the thickening of mucus, sweat, and digestive cells that can block internal pathways. Risk factors include lung damage caused by blockages, higher chance of infections due to germs, and the poor absorption of proteins from food. Because of these risks, “CF affects many different organs in the body, making people with the disease more likely to develop other health conditions including diabetes, cirrhosis, arthritis, reflux, hypersplenism (overactive spleen), and osteoporosis,” the CDC states.
While babies born in the United States are all screened for CF, the condition can develop after birth or during adulthood. Some indicators cited by the CDC consist of:
- Salty-tasting skin
- Cough that doesn’t go away, often with thick mucus or blood
- Wheezing or shortness of breath
- Frequent lung or sinus infections
While there is no cure just yet, people living with CF can find relief from their symptoms through various treatments. Examples include, airway clearance techniques (ACTs), medications, and emerging treatments. Finding a care center and looking into lung transplants are also ways in which people are able to live longer lives, the Cystic Fibrosis Foundation says. Foundation Care emphasizes, “Early diagnosis and effective treatments can help patients manage symptoms, improve functionality, and treat other health conditions that may develop.”
Advocating for a Cure
Continued scientific research, support, and overall advocacy help positively impact the lives of people living with CF. That’s why the Cystic Fibrosis Foundation’s Path to a Cure is a leading pioneer towards a cure. It focuses on, “Three core strategies to address the underlying cause of CF: repairing broken CFTR protein, restoring CFTR protein when none exists, and fixing or replacing the underlying genetic mutation to address the root cause of CF.” Both researchers and industry leaders from various fields are continuously brought together to move one step closer to an ultimate CF cure.
Involvement on the path to a cure is also something communities and individuals can also join. Educating themselves about the intricacies of CF and how people with the condition live every day, becoming a peer mentor, and/or participating in local CF chapter events.