Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.
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For a new parent of a child with cystic fibrosis, it can be an enormous help to speak to other parents in the same situation. The support and shared knowledge offered by another mother made a huge impact on me when my newborn son was diagnosed with CF.
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.
I never let my diagnosis of cystic fibrosis deter me from my dream of becoming a mother. I persevered despite the naysayers and, today, I have a beautiful son.
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.
Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.
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.
Understanding that I suffered trauma from medical encounters during my childhood helped make me a more effective self-advocate as an adult.
Although I had heard of cystic fibrosis, I never knew anything about the disease until a chance meeting with a member of the CF community during a networking event. Since then, I have provided donations to CF events and am in awe of the determination and attitude that people with CF have about life.
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.