Friday, January 4, 2013

Hello My Virtual Friend

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Today's guest post comes from Emily Schaller, Founder/CEO of Rock CF Foundation. Follow her on twitter @RockCFem

Technology is both a scary and amazing thing. Humans around the globe are plugged in and online all day and all night waiting for work emails, social media updates, breaking world news Tweets, and so much more. I must admit that I am guilty of all of these things. Every day you can turn on the news and see something wonderful or something tragic that has come from a social media.

Digital communication has been a huge benefit for myself and patients with cystic fibrosis and other illnesses around the world. Because of the risk of cross contamination between cystic fibrosis patients, we are strongly discouraged to have get togethers and hang outs. This is a very hard thing for me because I grew up going to CF camps with hundreds of other patients and also in an era where CF patients would room together in the hospital. This all started to change in the early 90's when patients with CF were shown to be passing bugs and bacteria to each other. Now, if you are living with a chronic illness, wouldn't you like to be able to meet up and talk with someone who is going through the same thing?

Well hello social media! In the last five or so years social media has paved the way to let us discover new friends who are going through the same things that we face. Not sure how to clean your nebulizer? Ask your online CF friend. Need more info about a clinical trial? Ask your online CF friend. What are some healthy high calorie meal? Just post that on Facebook and storm of answers will be shot back in minutes. Facebook, Twitter, blogs, Skype, and special online forums just for patients with CF have opened the doors for some very cool opportunities and have given patients and families of cystic fibrosis patients some hope.
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