My service dog, Jasper, and I relocated across the country and began to find our footing in our new home just before devastating forest fires started spreading around the area. Now, I feel more grateful than ever for the irreplaceable things in life, like Jasper.
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Although she has two CF mutations, my daughter does not have cystic fibrosis. She has CFTR-related metabolic syndrome. She’s healthy now, but what about the future?
Despite my knowledge of cystic fibrosis, I was scared when my son was diagnosed with the disease. I already had a toddler and worried how I would balance her needs with his medical care. Now that he is a year old, I realize my fears were worse than reality.
Cystic fibrosis kept me from thinking that I’d ever get married, but my improved health made my dream wedding possible. Three approaches helped me manage my CF while celebrating the happiest day of my life.
After I was told to stick with sprints because my cystic fibrosis would make it hard to become a distance runner, I was determined to prove that this disease won’t hold me back from my goals.
At 26, I was in and out of the hospital with bouts of pain and coughing up blood, with doctors telling me I had pancreatitis. It took a trip to a new hospital — and advocating for my health — before I finally got my correct cystic fibrosis diagnosis.
I was diagnosed with cystic fibrosis late; and the anger I felt was contagious for my son, who was dealing with his own diagnosis. But, I found support and am now focusing on the things in my life that I can control.
As I continue to realize the benefits of Trikafta® and my daughter grows up and needs me less, I feel as though I’m losing key parts of my identity — being a person with cystic fibrosis and a mother. However, I’m also finding I have room to let myself grow and explore different sides of myself.
When I was in college, I wanted to do it all and my health wasn’t as much of a priority anymore. I learned to accept that things will not always go according to plan and to integrate routine in my life to ensure my health comes first.
Learning that my daughter has cystic fibrosis has been a struggle for me and my family, especially as I deal with postpartum depression.