31 Days of CF: Creating Community for Mothers with CF

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by BNS Staff |

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31 Days of CF

Photo courtesy of Morgan Polen

Day 10 of 31

This is Morgan Polen’s story:

When I was pregnant, I began looking for a book to help me understand what pregnancy with cystic fibrosis would be like. I found none. I located a few scholarly articles (some free to the public, others that would cost $35–$200 to read) and that was it. 

Upon realizing there was such a small number of resources available for me, I called CFF Compass. Compass also did not have any books or articles, but they did have Peer Connect. I scheduled weekly text conversations with another mother who had CF. This was a wonderful start to my process of getting proper support, and made me realize that communicating with others in the same situation offered reassurance, encouragement, and social fulfillment. 

Each person with CF experiences it differently; it would be nice to have a group of women to talk to whose journeys and experiences were varied. This is when I got an idea to host a Facebook group in which all mothers with CF could connect. I called it “Moms with Cystic Fibrosis.” I wanted this group to be easy to find and access, so gave it a simple name and shared the group information in larger groups to get the word out.

Today, our group has 626 members! We have a number one rule, which is to be supportive, and the essence of our group is hygge: comfort, convenience, and well-being.

Over the past two years, we have:

  • made lifelong friendships
  • received an immeasurable amount of support in all aspects of life
  • learned together through a guest speaker series on topics of interest
  • organized donations to “cysters” in need
  • played so many games together
  • recruited a friend/researcher (Dr. Ladores) as a silent observer

Goodness, I can’t finish this list because I will run out of room. 

Every member of our group has made a significant and rich positive impact on the community of mothers with cystic fibrosis and I am so proud of our group, especially all of the cysters that make it what it is! If you’d like to join this community, find us on Instagram @momswithcysticfibrosis and on Facebook under the same name.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or go here to see the full series. 


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