"I try to reassure everyone who has been affected by this disease that CF isn't the end of the world if you don't want it to be."
The experience of living with cystic fibrosis is markedly different today than it was decades ago. Thanks to the discovery of the CF gene, the availability of effective drug therapies and advances in technology, the 30,000 Americans who deal with the disease day in and day out are living longer and fuller lives. In a word, they are thriving.
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Podcast 105: Organizing Your Medical Information

Twenty-five-year-old Jessica Link, who lives with cystic fibrosis, knows the importance of having your medical information organized and of advocating for yourself.

Jessica was born and raised in North Carolina and graduated with honors from the University of North Carolina with a degree in political science and psychology. She now works from home as a trader as well as part-time for a clothing retailer.

Jessica likes to keep up with American politics, bury her head in a good book, experiment in the kitchen, and shop. Jessica is living - breathing - succeeding with CF every day!

  • Jessica is an only child and was diagnosed at birth via meconium illeus.
  • “Being organized with all your medical information makes you very independent, pro-active, and a collaborative patient, rather than reactive-passive,” Jessica says.
  • Jessica stays organized with her health by using a “cheat sheet,” health notebook, Google Docs or a flash drive, pill strips, a hospital kit and a checklist.
  • “It’s important to stay organized because it’s YOUR body and YOUR health, not your doctor’s. Being organized will minimize medical mistakes,” she emphasizes.
  • Jessica blogs about life with CF (and other things…) at breathsentence.blogspot.com.
  • Jessica’s advice to others with CF: “Be compliant and get organized!”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation. 

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