May is Cystic Fibrosis Awareness Month! You might remember that we recently brought together a handful of Cystic Fibrosis Health Activists to chat about the needs of their online community, the myths around CF, and more. During our session, we heard that CFers deal with a lot of loneliness because they can’t interact with each other in real life. This makes the online Cystic Fibrosis community even more active as they’re always looking for ways to connect with one another. Enter CysticLife , an online community for CFers that was highly lauded by our Health Activist participants. Always interested in connecting with other health communities, we reached out to CysticLife to get more information on their mission, the role they play for CF patients, and what other Health Activists should know.
Here’s what they shared with us:
Tell Health Activists a little about Cystic Life and the mission behind the community.
CysticLife is an organization that works to positively impact the Cystic Fibrosis community. CysticLife operates both online and offline. Online, our main focus is CysticLife.org, a social network for the CF community, and our social media channels, both Facebook and Twitter. Offline, we produce printed materials for patients and families that we distribute to CF Centers across the country; provide activity, medical, and educational grants to the CF community for CF-related expenses; provide a fitness coaching program, CFit, for CF patients; and work to raise awareness about CF in the general community.
What do you see as the biggest myth or misconception around Cystic Fibrosis that you’d like to correct?
Cystic Fibrosis (CF) is no longer a childhood disease. While this may have been true 20 years ago, it’s no longer true today. Nearly half of the people living with CF in the United States are over the age of 18. Also, according to the most recent data, many are graduating from college, have full-time careers and enjoying life with a spouse or live-in partner. That however does not mean that we can become comfortable with our fantastic progress so far. Until we have a cure, or until we as a community can expect to live a long and normal life, we must never stop raising awareness
What do you want Health Activists to know about Cystic Fibrosis?
Cystic Fibrosis (CF) is a “lifestyle disease”. Many people are under the impression that CF is a lung disease, but this however is not true. CF is a disease of the cells within our body. Because of a mutated gene our cells do not properly exchange sodium and chloride thus causing many issues within our lungs. This faulty exchange leads to a thick and sticky mucus build-up which then leads to infections which leads to inflammation which leads to more mucus build-up – it’s quite the cycle!! The lung is not the only organ impacted however. CF can negatively impact the pancreas, kidneys, liver, and skin as well as bones, joints, and ligaments. As you can see, the effects of CF are far-reaching and not just confined to the lungs. But why do we refer to it as a “lifestyle disease”? Simply put – it affects our lifestyle and the choices we make each and every day as well as the lives of those around us. Many CF patients spend up to 4 hours a day doing various treatments and activities that they would not be doing without this disease. When you devote nearly 30 hours a week to improve your health, we’d hardly call that “just a lung disease”! CF demands that we adjust our lives and devote much time to our health if we expect to live a “normal” life.
What awareness event, program, etc. would you like to share with the Health Activist community and their community members?
CysticLife is currently working on a short film, Living Xtreme: Beyond Cystic Fibrosis. The film, being co-produced by CysticLife, The Cystic Fibrosis Lifestyle Foundation and The Essential Image Source Foundation, will highlight the extreme hobbies and lifestyles of people with Cystic Fibrosis. Through this film, we will show members of the Cystic Fibrosis community, as well as the general public, how exciting, active, and rich life with Cystic Fibrosis can be. In addition, we are working on a full length documentary, which will build upon the short film. For more information, go to www.livingxtreme.org.