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.
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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.
There are a lot of misconceptions about illnesses. For one, you're supposed to look sick -- or like other people's perception of a sick person. Once I started to doubt myself and the gravity of my illness, I began internalizing a whole lot of guilt.
Watching a Bruce Lee movie inspired me to live my life on my terms.
Growing up, Keenan Flynn rejected what he saw as negative messages surrounding cystic fibrosis. Keenan credits a healthy mental attitude, and a non-acceptance of the negative messages about his health, for his physical development.
Cystic Fibrosis Foundation Therapeutics Inc. made its first major award last month to advance gene editing research in cystic fibrosis. Editas Medicine Inc. will explore the potential of using what some scientists refer to as “a tiny pair of scissors” to snip out the genetic defect that causes CF.