After my partner was diagnosed with cystic fibrosis, I had to learn how to support her and keep myself from getting rundown. Over time, I have learned that doing small things, such as ordering medicines, can be enormously helpful.
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Cystic fibrosis kept me from thinking that I’d ever get married, but my improved health made my dream wedding possible. Three approaches helped me manage my CF while celebrating the happiest day of my life.
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.
As someone with cystic fibrosis, I struggled with the fact that I might be a burden to those who helped care for me. Things changed when I married Ramón and learned the true meaning of caregiving.
My friendship with Judy, who had cystic fibrosis, helped me see how I could accomplish my career goals despite my own chronic illness. Unfortunately, she died six years ago, but her inspiration lives on, and I know she would be proud of me.
As an adult with cystic fibrosis, I know I am blessed to be healthy right now. I find joy in spreading awareness of CF and encouraging others to follow their dreams no matter what.
To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
Take it from me, dating with cystic fibrosis can be hard — from not having the energy to keep up with our partners to dealing with all the not-so-sexy aspects of the disease. But it’s important to not settle for anything less than the love and support we deserve.