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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The road to rebuilding shattered dreams is not a straight one.
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 never had the luxury of time to reflect on the hardships that I experienced fighting cystic fibrosis because I was too focused on that particular day’s struggle. Still, there are two experiences that have stuck with me even though they were more than 10 years ago.
I am excited that the Cystic Fibrosis Foundation has surpassed $100 million in research funding through its Infection Research Initiative and that it promises to continue to support infection research at the same rate as the past three years. I am hopeful that the patient community will hear more about funding updates for new infection research as we move forward.
I was diagnosed late with cystic fibrosis. When I found out I had bronchiectasis on top of that, I was crushed. However, nine years later, my health is as good as it can be, and I’ve learned the value of fighting back.
Because my daughter's bowel perforated when she was a newborn, she needed to have surgery to temporarily reroute her stool so that it was collected through her abdomen into an ostomy bag. Those grueling days of ostomy care -- sometimes as often as every hour day and night -- were some of the darkest days of our cystic fibrosis journey.
My son has had a problem with eating ever since he was born prematurely and diagnosed with cystic fibrosis. After a lot of stress and anxiety about reaching his weight goals, we finally enlisted an occupational therapist, who helped him learn to love eating.
I learned that service dogs for diabetics can be trained to detect the scent of high or low blood sugar. Could this type of training be effective for teaching my service dog to detect when I have a bacterial infection?