My struggle to cope with my CF brought me to some dark places. The support of my care team helped me come to the light.
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CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
CF demands a parent's time, but childhood lessons taught me that all of my children need my love and attention.
In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
Living with cystic fibrosis, your dreams for the future can be a little hazy. But while attending my grandmother's 90th birthday celebration recently, I was struck by an image of myself that I had never seen before: myself in the distant future.
Living with cystic fibrosis is a constant reminder of the things that have been taken from me. I feel like I've made a bargain with the devil, so to speak.
The Partnerships for Sustaining Daily Care (PSDC) team had the opportunity to hear from people with cystic fibrosis, families and care teams at five Family Education Days at care centers across the country. Here's what we heard.
Finding a Balance Between CF and High School
In a culture flooded with advertisements about the perfect body, secret weight-loss tricks and fad diets, our cultural ideals of weight are often skewed to an image that is far from healthy.