Planning a last-minute vacation before the end of the summer? We’ve got you covered! All week long we’ll be sharing tips, advice and personal stories on traveling with CF.
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Although the initial diagnosis for cystic fibrosis seemed to elude our doctors, we knew in our hearts that our son had cystic fibrosis. When we advocated for and got a CF doctor, we began a relationship that became a partnership of mutual trust and respect.
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.
My son, Keith, was diagnosed with pancreatic cancer after an initial focus on CF as the cause of his health issues. With people with CF living longer, we need more awareness of pancreatic cancer in CF individuals due to the potential increased risk.
My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.
Since my daughter, Kinley’s, cystic fibrosis diagnosis, I have come to rely on her care team. We have become a true team in Kinley’s care.
After starting on Trikafta®, I finally became able to travel without getting an immediate exacerbation when I returned home. Now, I am relishing the opportunity to travel abroad, while taking every precaution necessary to protect myself from the pandemic.
My experience traveling with cystic fibrosis has taught me that a chronic illness should never slow you down. It may require extra planning and packing, but it’s worth it and definitely doable.