Enteral tube feedings are an important treatment option in cystic fibrosis when oral intake is not adequate to meet nutritional goals. A multidisciplinary Cystic Fibrosis Foundation panel developed consensus evidence-based guidelines on all aspects of care regarding enteral feeding.
The Mutation Analysis Program provides free genetic testing to people with cystic fibrosis to help identify their CF gene variants.
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.
Parents of teens with CF often ask what they can do to help their child who is struggling to come to grips with their disease or is simply going through a rough patch. Here's some of my best advice.
As parents of kids with CF, we can make a life-transforming difference by focusing as much on their mental health as we do on their physical health. If you think your child's CF is taking an emotional toll, asking yourself these questions may help.