The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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In their final “Real Talk” video, Emily, Piper and Somer talk about defying expectations, how every person with cystic fibrosis is different and the reality that there is no set reality for this disease.
Nov. 13, 2015
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1 min read
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Over the years, I have received some tough questions from children with CF, but one has really stuck with me. And if I were asked it again today, I know exactly what I would say.
Nov. 10, 2015
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4 min read
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When our son was diagnosed with CF, the clinic director sat with me for hours answering my questions. Since that day, I have wanted to bottle up his advice and become a voice of encouragement for new CF parents.
Nov. 9, 2015
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4 min read
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Parents of teens with CF often ask what they can do to help their child who is struggling to come to grips with their disease or is simply going through a rough patch. Here's some of my best advice.
Nov. 4, 2015
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5 min read
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I have spent many days trying to impart my commitment to my daughter in her fight with CF but, in the end, she feels alone. I take a moment to reprimand myself for forgetting the importance of teaching through example. Then, I focus on change.
Oct. 23, 2015
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4 min read
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Emily, Piper and Somer continue their “real talk” about living for each day, reinventing their future and being up for a good challenge.
Oct. 20, 2015
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1 min read