When I was 13, my family went from having two seemingly normal kids to two CF patients in a manner of a few short months -- and boy, did it change everything. Because of my late diagnosis, I faced a unique set of challenges that helped make me the strong person I am today.
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Cystic fibrosis can't take living away, especially when one loves life!
When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled.
I knew that I needed to make a change when I began checking on home from the office and checking on work at odd hours from home.
While I am not grateful for having cystic fibrosis and cystic fibrosis-related diabetes, I have no doubt that if it weren't for me having CF, I would not have become the person that I am today.
All my life I wanted an answer to why I was so sick. Then I got it, in the form of a CF diagnosis.
Ever wondered what it takes for a potential cystic fibrosis drug to become approved by the U.S. Food and Drug Administration? Here's an explanation of the four phases of clinical research.
There have been a few moments over the past four years that have provided us with perfect opportunities to give both of our kids a fuller understanding of the multifaceted nature of cystic fibrosis.
When our son was diagnosed with CF, the clinic director sat with me for hours answering my questions. Since that day, I have wanted to bottle up his advice and become a voice of encouragement for new CF parents.
Earlier this month, we learned that the new CF drug Orkambi was approved by the FDA. This was such an exciting, memorable and emotional day for everyone in the CF community. We heard from many who were thrilled about the potential for this drug to help people with CF and also heard from those who would not benefit from this breakthrough. Following are some reactions from those this impacts the most: people with CF and their loved ones.