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.
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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.
CF Foundation's $1 Million Investment Helped Drug Known as Cayston® Become a Reality
Proposed legislation has the potential to revitalize the global marketplace for novel antibiotics, bringing urgently needed medicines for drug-resistant infections to patients.
Today, the Cystic Fibrosis Foundation announced it has awarded up to $3.3 million to Polyphor AG to develop an inhaled version of murepavadin, an antibiotic that targets multi-drug resistant Pseudomonas aeruginosa infections in people with cystic fibrosis. About 17% of individuals with CF who had Pseudomonas infections last year had multi-drug resistant strains.
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 voice plays an important role in managing my cystic fibrosis. Breathing techniques that I have learned as a singer help me perform pulmonary function tests and my voice can signal a change in my health — if I listen to it.