My exercise routine has gone through quite an evolution from college to motherhood and life on the transplant list.
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Read how Blake Leyers helps put a face on this disease by sharing her brother's story.
When I was diagnosed with CF at 22, I was relieved. I could start treating the disease we'd been trying to identify for years. But after the initial excitement, I started facing issues of denial, anger and confusion…so I ran.
I was thrilled to learn earlier this month that Emily Kramer-Golinkoff, a young woman living with cystic fibrosis, would be honored by the White House as a “Champion of Change” for her work to advance the field of personalized medicine.
After a childhood spent running, I had largely given it up by the time I became an adult. But five years ago, it became my outlet. CF and COVID-19 temporarily sidelined me, but as long as there is air in my lungs, I won’t ever give up.
I thought my exercise capacity on continuous oxygen would decrease. Thanks to the support from others and high-intensity interval training, my exercise capacity actually increased.
My brother’s optimism despite living with cystic fibrosis has inspired me to advocate, share his story, and use my voice to push for positive change.
Although I had my doubts, I was able to hike the Oregon Coast Trail and learn about myself while doing it.
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.
I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.