Teams of dedicated health care professionals in a nationwide network of more than 130 Cystic Fibrosis Foundation-accredited care centers partner with people with CF and their families to provide expert care and specialized disease management.
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I have found that the limits cystic fibrosis imposes on my life are a bit like weather forecasts -- open to unexpected changes. Whether by hard-fought scientific advances, thoughtful (personal) planning, creative thinking or sheer luck, many of the limits of CF now come with beautiful possibilities attached.
Starting at 6 months of age, I began my daily journey battling my chronic illness, cystic fibrosis. And now, at 28, my heart is heavy because one of my nearest and dearest caregivers passed away unexpectedly … my father.
Hollywood often portrays people with serious illnesses as brave, inspirational characters. I don't always feel that way, and sometimes the real "fight" is facing that fact.
There are no easy remedies for the perpetual dance that the parents of a chronically ill child do to deal with the painful and enduring isolation. And personally, I found a sense of hopeless defeat.
Some days, the biggest struggle I have is accepting that I have CF.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
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.