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 2020, I went from having almost no knowledge about cystic fibrosis to the shocking revelation that I've actually been battling CF my entire life. At 53 years old, I'm still a work in progress, but I'm facing this new diagnosis head-on.
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Living in Pakistan, I didn't know I had CF until I was 18 years old. After absorbing a big emotional blow, I started to fight back.
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I was heartbroken when I learned my baby would be born with cystic fibrosis. However, my son's CF care team changed my perspective and connected me with other mothers of children with CF who became lifelines of support for me.
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We've only lived with our daughter Louisa's CF diagnosis for six months. Besides adjusting to her treatments and care needs, our priority has also been to talk openly about this new normal with Louisa's older brother -- in ways a 3-year-old can understand.
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I had all the classic symptoms of cystic fibrosis, but neither I nor my doctors ever considered them in their totality. The symptoms were treated like separate problems -- asthma, nasal polyps, digestive problems -- until one specialist noticed a tell-tale sign that brought about my clarifying diagnosis.
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For parents of a child newly diagnosed with cystic fibrosis, it can be scary to read what's online about CF. However, I want to shed some light and positivity on what it's like to have CF. Everyone with CF is different, and it's possible for your child to lead a full life.
