Protecting your children with CF, at all costs, sounds like a loving thing to do until you consider what it may cost them. To keep a balance between their health and healthy childhood development, my husband and I have learned that it takes a prudent approach with careful and creative decision making.
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Before I had my son, I had organized my life in such a way that everything flowed in orchestrated harmony. But I found that as he grew I allowed his needs to eclipse my own, and my life soon fell out of balance.
Having cystic fibrosis can be a full-time job -- especially when you already have one. Here are some of my tips for managing work, life and a busy schedule with CF.
After turning 60, I decided to mark the milestone by creating a “living list,” 60 things I could do to raise awareness and money for cystic fibrosis care.
As a teacher with cystic fibrosis, I find it no surprise that heading back to school can be a shock to my system. But over the years, I've learned that if I can remember three main things, I can stay healthy through the transition back to school.
As a CF mom, I'm always in a state of wonder about whether the choices I'm making are the right ones for my son with CF and the rest of the family.
There are many ways you can support a family with a child or children with cystic fibrosis. Educating yourself about the disease and its treatments and offering to help without being asked are some of the best ways you can show you care.
Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.
Despite the scars and appearance-altering side effects of medications, I am proud of what my body has survived in the face of cystic fibrosis. Being a brand ambassador has lifted my spirits and led to a greater acceptance of my body, which has withstood a double-lung transplant, a feeding tube, and a port.
My son’s CF diagnosis created an unexpected challenge while breastfeeding him. But through practice, help from our care team, and support from the CF community, we found the perfect balance to meet his nutritional needs.