November 2012

New Online Resources for Adults with CF

New Online Resources for Adults with CF
Today nearly 50 percent of people with CF in the United States are adults, with many leading healthy and busy lives that include careers, marriage and families of their own.

With these new possibilities come distinct challenges — from balancing work and relationships with daily CF treatments to long-term financial planning and understanding health care coverage options.

Adult Guide to Cystic Fibrosis

The Cystic Fibrosis Foundation recently launched a new section of its website, www.cff.org/Adults, a one-stop resource to help adults with CF meet these challenges.

The Adult Guide to Cystic Fibrosis offers the latest information on health and well-being, practical advice on living with CF and insights from other adults with CF. The guide aims to give readers the “big picture” along with tips and reminders on particular topics, including working with the CF care team, using the right therapies, traveling with CF and setting up and sticking to a personal exercise program.

The guide is a collaboration between the CF Foundation, people with CF and CF health care professionals.

“We are always looking to add to the guide. We want people to let us know their ideas and think about writing about a topic. The expertise and experience of adults living with CF can help others facing the same issues,” said Leslie Hazle, M.S., R.N., C.P.N., director of patient resources at the Cystic Fibrosis Foundation.

If you are interested in contributing to the guide, please contact resources@cff.org.

New Webcast: CF Diagnosis in Adulthood

Although most people with cystic fibrosis are diagnosed in early childhood, some first learn that they have CF at a much later age.

A new CF Education Day webcast looks at diagnosis with CF in adulthood from different angles, including why the disease might go undetected until a later age, how people adjust to the diagnosis and ways to build a community of support.

The webcast features Mary Lou Figley, an adult who was diagnosed with CF when she was in her mid-40s, and Milene Saavedra, M.D., M.S.C.S., assistant professor of medicine at National Jewish Medical and Research Center in Denver.

Learn More

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