May is Cystic Fibrosis Awareness Month: Spreading Rare Disease Awareness

May is recognized annually as Cystic Fibrosis (CF) Awareness Month. Each year, this rare disease community comes together in order to help spread awareness about cystic fibrosis among the general public and the medical field. This year’s campaign is focused on using social media, such as Facebook, Instagram, and Twitter, to talk about this rare genetic disorder and share patient stories and experiences. Participants are encouraged to use the hashtag #CFawareness on all relevant posts.

About Cystic Fibrosis

Cystic fibrosis is a type of genetic disorder which can have impacts throughout the body, but it is most characterized by the build up of abnormally thick, sticky mucus in the lungs. This mucus becomes a fertile breeding ground and habitat for potentially infectious bacteria. Many patients must take antibiotics for much of their lives. This disorder is caused by mutations of the CFTR gene. Symptoms of the disorder include progressive decline in lung function, lung and sinus infections, coughing up mucus, fatty stool, poor growth, infertility in males, clubbed digits, and digestive problems. Treatment includes antibiotics and medications or procedures intended to maintain lung function. Lung transplant is an option when lung function declines severely. Life expectancy ranges into the 40s and 50s with good care. To learn more about cystic fibrosis, click here.

Spreading the Word

The Cystic Fibrosis Foundation has several resources to help people spread the word about cystic fibrosis and share important information. Patients are also encouraged to used CF Awareness Month to tell their own patient story. While it can be difficult for some patients to talk about their difficulties, others can find it very liberating and uplifting to share with others.

The resources include Facebook cover photos, profile picture frames, basic facts that can be shared, a video, and links to the CF Community Blog. You can access these tools here.

Check out the CF Community Blog here.

To learn more about the activities of the Cystic Fibrosis Foundation, click here.

Spreading awareness is one of the easiest and most important ways to help out any rare disease community. Don’t hesitate to get involved in CF Awareness Month.

 


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