I have faced a lot of ignorance about my cystic fibrosis -- even from people whom I thought were my friends. I have learned not to take it personally. I just educate who I can and move on.
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I always say that when life gives you lemons … turn around and write some Japanese-style poetry. I hope you enjoy these haikus I have written about life with cystic fibrosis.
For the most part, I have been fortunate with my cystic fibrosis in that I never needed to go into the hospital. But, that all changed in 2008. Fortunately, I was able to start using Kalydeco. My health improved, and I was able to continue my career in radio and TV.
I spent most of my life hiding the fact that I had cystic fibrosis. It was only when I fully accepted that CF was a part of me that I quit my self-destructive ways and began to enjoy life.
It's hard not to feel guilt for all those years my partner spent taking care of me as I got more and more sick from cystic fibrosis. This Valentine's Day, I'm not going to dwell on the past. I'm going to focus on how much we love and care for each other right now.
This year, I'm planning a big, beautiful queer wedding with my fiancée, Ali. Even though I felt conflicted about bringing Ali into a life with CF, she stayed by my side through some of the hardest challenges I've ever faced.
When I met my husband, who has cystic fibrosis, he was listed for a double-lung transplant. I thought I was prepared for that. I wasn't.
It might seem strange but for someone with cystic fibrosis, something as simple as a mammogram can spark joy. It means that I have lived long enough to have reach this preventive care milestone, and that is something to celebrate.
With COVID-19, a year indoors -- and online -- has brought up a familiar feeling that screen time has the potential to bring us hope and laughter. On the other hand, the internet can also convince us that the sky is falling.
At 86, Marlene Pryson may be one of the oldest individuals living with cystic fibrosis. During her long life, she has dedicated many years of service to helping CF families as a CF clinic coordinator and family liaison.