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.
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When I was diagnosed with CF at 22, I was relieved. I could start treating the disease we'd been trying to identify for years. But after the initial excitement, I started facing issues of denial, anger and confusion…so I ran.
The Cystic Fibrosis Foundation awarded U.S. Sen. Susan Collins (R-Maine) the Breath of Life Legislator Award on Nov. 3 for her leadership in ensuring that people with cystic fibrosis have access to the adequate, affordable care they need to live full and healthy lives.
The road to rebuilding shattered dreams is not a straight one.
While my husband and I are learning more about raising a daughter with cystic fibrosis, we don't let the occasional humorous moments pass us by. Being able to laugh about certain things lets us know that we have come a long way.
My daughter loves looking up at the stars, which is perfect because we plan on teaching her to reach for those stars in every moment of her life and not settle for anything less.
As a parent of two kids, I find myself wondering if Anna's CF is changing Jack. Would he feel the same responsibility for her if she didn't have CF?
I had all the classic symptoms of cystic fibrosis, but neither I nor my doctors ever considered them in their totality. The symptoms were treated like separate problems -- asthma, nasal polyps, digestive problems -- until one specialist noticed a tell-tale sign that brought about my clarifying diagnosis.
On April 7, the Foundation presented the Alex, Jena, and Dream Big Awards to leaders in the cystic fibrosis community for their dedication to the Foundation's mission of finding a cure.
I struggled emotionally after learning that after negative carrier and newborn screens, my son had cystic fibrosis. I’m now advocating for people with rare mutations.