9 Famous Cystic Fibrosis Patients

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9. Laura Rothenberg

Laura RothenbergLaura Rothenberg was a student at Brown University and a patient with cystic fibrosis. What made her famous was a book she wrote titled “Breathing for a Living: A Memoir,” as well as a radio documentary called “My So-Called Lungs,” which aired on NPR August 5, 2002. Born in 1981, Laura was aware that she would die young, but she tried to have as normal a life as possible and she believed people did not see her as sick. She underwent a double lung transplant, but a year and a half later, the new lungs started to fail. Laura died in 2003 aged 21-years-old.

“I definitely think about after I’m gone. When I was younger, I used to try and plan my funeral, where I’d want it, how many people I’d want to be there, what it would be like. I’ve always been scared that people would forget about me. Eight years go by and, you know, someone who dies isn’t the first person you think of when you wake up necessarily. But I’ll find a way so that people won’t forget about me. You know, I’ll give friends things of mine that they’ll always have,” Laura Rothenberg wrote in one of the many audio diary entries she recorded over two years.

Here are six organizations doing remarkable work either in research or alongside patients and their families which you can help directly or bring awareness to.

Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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