At times, my pediatric CF care team told me about the possible negative outcomes of my cystic fibrosis. Their gentle support helped prepare me for unexpected good health, and is one reason why I was able to qualify for the Boston Marathon.
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Researchers from the University of Pittsburgh wanted to better understand the realities of parenting as a person with cystic fibrosis, so they collected firsthand accounts from members of the CF community.
I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
Not only am I a member of the CF community, but I’m also a member of the clinical community — an oncology nurse — and I have had to endure hard lessons to learn to advocate for myself and get the medical care I need.
I have had a fortunate life with cystic fibrosis given the fact that I married, had two kids, and a career. However, with increasing — and sometimes bewildering — health issues, I’m beginning to wonder whether it’s my CF or just aging, or something in between.
Proposed policies would impose significant barriers and add burden for people with CF
Groups urging need for revitalizing antimicrobial development call for passage of the bill this year
I was recently diagnosed at 69 years old. Although it helped explain why I had been sick so often and gave me a new community, I can’t help but think about the lost time when my disease went untreated.
My mom was always my biggest advocate and most selfless caretaker, but she went above and beyond when she also took my friend under her wing.
People like me are living longer — median survival for someone with cystic fibrosis is now 56 thanks to research and care. But as I grow older, my health is getting more complicated and I'll need my care to keep up.