When you have a daughter with cystic fibrosis, your mornings become a tightly choreographed routine of treatments and getting ready for work and school. Add a sickness to it, and the routine becomes more complex, the pace more frenetic, and the worries more urgent.
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Although I have no personal ties to people with cystic fibrosis, I developed my own connection to the disease -- first as a biology student understanding the science behind CF, and second as a member of the Tomorrow's Leaders College Program, where I learned about the people behind the statistics.
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 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.
I didn't know until date four that my future wife had cystic fibrosis and was a lung transplant recipient. She was too wonderful for me to care.
Having cystic fibrosis will interfere with your relationships. I'd like to share with you some hard-won lessons about how I continue to keep my romantic relationship healthy.
Here is my advice to others who have just learned that their partner has a chronic illness.
On National Sisters Day, twin sisters with cystic fibrosis share their special bond and hope that all people with CF can find that special “person” in their lives.
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.