Being a parent to a child with cystic fibrosis is hard. You need to hear from someone else in your shoes that it’s OK to grieve for the life you thought you were going to have with your child.
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As a community, we are very good at masking and keeping a safe distance to reduce risk from germs. And just like we have highly effective therapies to treat CF, we now have highly effective vaccines to protect our kids from COVID-19.
Coping with cystic fibrosis as a child led to depression. Creativity -- especially singing -- helped me find myself and led to my auditioning for The Voice Australia.
For me, exercise has been a magical treatment for my cystic fibrosis. I have found that our bodies respond to the demands put on them, so train your body to meet a fitness goal, and your strength and endurance will improve.
Growing up with cystic fibrosis was often lonely, but discovering how to make myself and others laugh helped me navigate those years and gave me a purpose in life.
At 34, I had no obvious symptoms or family history of colon cancer. My body was telling me something was wrong and compelled me to push for more tests to reach a diagnosis. Now every day I get up and learn to be comfortable living in the uncomfortable. With more screenings happening earlier, you may never have to.
We’re highlighting six creators who are helping raise awareness of cystic fibrosis. By sharing parts of their life with CF on paper or on screen, they’re voicing the variety of ways that people experience the disease.
I was diagnosed late with cystic fibrosis. When I found out I had bronchiectasis on top of that, I was crushed. However, nine years later, my health is as good as it can be, and I’ve learned the value of fighting back.
I had no idea what cystic fibrosis was — or that I had it — until six months of pancreatitis led to a diagnosis.
When I went off to college it was up to me to manage my cystic fibrosis for the first time without help from my family. I felt fine after skipping my medications and decided to stop using my noisy vest because it embarrassed me, and I wanted to make friends at my new school. As a result, I stayed in the hospital for a few weeks and left with a new perspective on life.