13 January 2010

A Facebook for CFers

Cystic Fibrosis patients cannot be within 3 feet of each other.

This means Bennett cannot have CF friends for playdates.  We must be thoughtful about sitting too close to other CF patients in the waiting room at our Pulmonology appointments.  And CF summer camps no longer exist.

This is because only a few years ago, doctors realized that CF patients were unknowingly transferring respiratory illnesses between each other...illnesses that only CF patients get...illnesses that once acquired cannot be gotten rid of.

So, as parents, the only contact we have had with CF families have been over the phone, through email and blogs.  This works but is certainly not as nice as meeting in person.  There is no issue with us meeting with other CF families, but we cannot bring Bennett along, so we have found alternative ways to communicate.

This is why one "a facebook for CFers" is a really cool idea.  Just this week, a Facebook like website came online called "Cystic Life".  It is really well done and offers a much easier way to communicate with both parents and those with CF. is probably more like a hybrid of a facebook, blog and forum.  But it works well and offers a sense of community.  We have already gotten some great ideas regarding how to help Bennett and been able to ask questions important to us.

It's funny how CF has become part of our daily life in so so many ways.


  1. Wow - that's so interesting. I'm sorry to hear that you can't have more immediate contact w/ other CFers as I'm sure it would be helpful for you and for Bennett.

  2. That's amazing. I had no idea. It so stinks that Bennett won't be able to talk to other kids face-to-face... But isn't that why webcams exist? Hopefuly sites like CysticLife can help kids connect in a safe way using webcams. I know Jordan's time with other kids have meant a lot to her and she's only four!


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