People with cystic fibrosis are living longer and more productive lives than ever before, and they are overcoming many of the life challenges previously presented by the disease. Cross-contamination still is a real threat, however, which means people with CF cannot be in proximity to each other. This reality can make it difficult for them to form relationships with others who also have the disease, and they’re left with few options for sharing their experiences and feelings.
These days, there are numerous social media sites that provide virtual gathering places and communications streams for people with similar interests and experiences, and there is no shortage of these virtual communities for people with CF. In addition, an entire army of bloggers has sprung up and is providing play-by-play on how well (or not) they are dealing with the disease.
Still, there are few online venues where people with CF actually can tell their own stories and feel as if they are making real connections with other CFers. Club Cystic Fibrosis bridges this gap -- it's a web site that allows people with CF to open up and share some very personal stories with others who may be able to relate to their experiences.
In addition, Club CF provides inspiration. Young adults with CF now can look to people in their 30s, 40s, 50s and even 60s who are living full lives despite the disease. CFers of all ages can go there to find people at the same stage in life who are finding ways to deal with similar challenges. And everyone can draw inspiration from the stories of caregivers, often the unsung heroes of the CF community.