Our Cystic Fibrosis Journey Video Series: Support Systems

PatrĂ­cia Silva, PhD avatar

by PatrĂ­cia Silva, PhD |

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UPDATE 06/17/2016

One of the Our Cystic Fibrosis Journey youtubers reached out to us letting us know the following:

Sorry all, due to differences in the group the channel is no longer active. The original group creators have also decided to delete all of the content that was on this channel. Very unfortunate, and hoping to bring back something like this in the future.


https://www.youtube.com/watch?v=lKAEw0GXqM4

Cystic fibrosis (CF) is a genetic, chronic and progressive condition for which there is currently no cure. While patients need to deal with the symptoms of the disease and frequent respiratory infections, having support is also determinant for coping with cystic fibrosis. In this video, Miranda Porche, CF patient, and blogger, discusses the importance of establishing a support system.

“When Megan brought up the support systems being more than just people in our lives, I kind of had to take a step back and think about exactly what that meant. The more I thought about it, the more I understood it, and kind of really love that aspect of it,” said Miranda Porche. “Because it’s not just the people in our lives that support us, the machines that keep us alive, the things that we do to support ourselves and help ourselves get through this life and just make things a little bit more bearable…”

The video was posted on a YouTube channel called Our Cystic Fibrosis Journey, which is a six-week-old project that works in collaboration with cystic fibrosis patients and bloggers. In addition to Miranda Porche, who posts on Thursdays, the group also includes Shianne on Mondays, Taylor Puckett on Tuesdays, Larry Brian on Wednesdays, Bailey Ann Vincent on Fridays, Megan on Saturdays, and Siobhan on Sundays.

Stay updated on all the latest CF news here: https://bit.ly/1jNDqsz

Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.