4 posts tagged “cystic fibrosis”

Four actions = cystic fibrosis awareness

Posted May 8th, 2014 by

You guessed it! Along with mental health, anxiety and depression, Huntington’s disease and fibromyalgia… May is also Cystic Fibrosis (CF) Awareness Month.

Here are some quick facts about CF from the Cystic Fibrosis Foundation (CFF):

  • CF is a genetic condition that primarily affects the lungs and digestive system.
  • CF causes unusually thick, sticky mucus that clogs the lungs and obstructs the pancreas.
  • Common symptoms include salty-tasting skin, persistent coughing, frequent lung infections and wheezing or shortness of breath.
  • 30,000 children and adults in the U.S. are living with CF.
  • More than 75% of CF patients are diagnosed by age 2, and nearly half of the total CF population is over the age of 18.

Although there is no cure for CF, there are treatments to loosen thick mucus and prevent the airway from clogging. The CFF has helpful info about managing and treating CF on their website, and you can see what treatments others are taking on PatientsLikeMe.

So what else is going on for CF Awareness Month? The CFF breaks awareness down into four actions:

WALK as part of the CFF’s “Great Strides” national fundraising event.
ADVOCATE by using the CFF Advocacy Toolkit and reaching out to officials.
EDUCATE by reviewing FAQs about CF and learning about testing.
CONNECT on Facebook and Twitter using #CFAwarenessMonth and #CysticFibrosis

And continue that connecting part with the more than 1,100 CF members on PatientsLikeMe. They’re tracking their progress and sharing their experiences in the forum, and together, everyone is learning more about each other’s journeys with CF.

 Share this post on twitter and help spread the word for Cystic Fibrosis Awareness Month.


“Shine a spotlight” and raise awareness for Cystic Fibrosis

Posted May 25th, 2013 by

May is Cystic Fibrosis (CF) Awareness Month and the Cystic Fibrosis Foundation (CFF) is working to “shine a spotlight on what CF is and the progress being made toward a cure.” The CFF has a terrific awareness page where you can find info on ways to get involved, like: Walk in Great Strides, “Take Action” advocacy, and social media campaigns.    

CF-Awareness-Month-Cover-2

One creative way the CFF is asking you to donate to the cause actually doesn’t cost you a penny. They’d like everyone to “donate your Facebook cover image.” The picture that you see in this blog post can be downloaded on the CFF website and then uploaded onto your own Facebook page to help raise awareness.

If you’re living with Cystic Fibrosis, find others just like you in our growing community of more than 1,000 CF patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.