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    • #15575
      Jenny Livingston

      I’ve recently begun speaking with a young woman who, until our conversations started, had never spoken to another person with CF. She is not the first person I’ve met for whom this is the case, nor will she be the last, I’m sure.

      Growing up with two sisters with CF, plus having opportunities to attend events like CF camp (which I recently posted about) means that I’ve never experienced a time when my life didn’t include others with CF.

      I can’t imagine being the only person I’d heard of or known with this diagnosis!

      Even though I’ve always known people with CF, I didn’t get deeply involved or find a true sense of community until 2009. That’s when, at the suggestion of a friend/healthcare provider, I started blogging. Immediately, I was able to connect with friends all over the world (literally!) who understood many of the things I was going through.

      Since then, I’ve continued to write, connect with others, and share parts of my life on social media. I belong to several CF related Facebook groups. I’ve attended and helped plan virtual events. I’ve actively participated in fundraising for CF (Great Strides, among other things). Some of my dearest friends in life are people who I’m unlikely to ever meet face-to-face. They are internet friends who became like family to me.

      On the spectrum of not knowing another soul with CF to being deeply engaged with the community, where do you fall? How involved are you with the online community or CF fundraising efforts? Is it important to you to connect with others in the community, or do you prefer to be less involved?

      Clearly, if you’re reading this, you’re involved with the online CF community to some extent (being that this is a CF forum) But I’d love to know how much you’re involved in other ways.

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