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.
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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.
The treatment has the potential to prevent Aspergillus fungal infections in people who have had a lung transplant.
I had never heard of cystic fibrosis until I received my diagnosis — but learning how to navigate my CF prepared me to advocate for my husband’s medical care and helped me grow as an artist.
A chance meeting at a CF conference 12 years ago gave me one of the most valuable gifts: my CF Mama friend group. Since then, we’ve invested time in our friendship and supported each other through the laughs and the tears.
Throughout my life with cystic fibrosis, I never thought about the prospect that I would outlive my loved ones. Now that I have attended some of their funerals, the thought of my own mortality has caught up with me.
Hospice care helped my daughter, Desirée, through her final days.
Addressing variability in newborn screening can prevent missed diagnoses and delays in early care intervention.
I began fundraising and raising CF awareness soon after my son, Aidan, was diagnosed as a baby. After years of successful fundraiser walks, Aidan asked me to stop — opening my eyes to the difference between being a mom of someone with CF and being the person who is living with CF.