When I was in college, I wanted to do it all and my health wasn’t as much of a priority anymore. I learned to accept that things will not always go according to plan and to integrate routine in my life to ensure my health comes first.
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One of the reasons I decided to attend boarding school was to take charge of my cystic fibrosis care. Although I’m not perfect at taking care of myself, I learned that the importance of staying on top of treatments when my parents gave me the chance to fail.
The excitement we experienced anticipating our daughter, Tegan, starting Trikafta® gave way to sadness and confusion as she experienced emotional side effects.
Bill will jump-start rebuilding of the antibiotics pipeline that is vital to stave off a looming pandemic.
Just like there isn’t always a right (or one) answer to parenting, parenting two kids with CF has shown me that I need to just do the best I can for my family as we navigate my family’s constantly changing needs.
On the brink of being listed for lung transplant, I started Trikafta®, which has helped stabilize my health and helped me avoid it for now, but a transplant could be in my future.
Now that I’m in my 40s and post-lung transplant, I’m beginning to embrace the realities of aging with cystic fibrosis. Despite the gray hairs and deepening wrinkles, I know that I am lucky to be looking forward to mammograms and menopause.
Vertex’s copay assistance changes add an undue burden for people living with an already expensive, challenging lifelong disease.
I was determined to make my dream of becoming a mother a reality despite the potential risks that pregnancy can cause for people living with CF. It certainly wasn’t easy, but the challenges of pregnancy and CF were rewarding in the end because I now have two wonderful girls who call me mom.
Accepting my son’s cystic fibrosis diagnosis has been a year-long journey for our family. I learned there is more to motherhood with a chronically ill child than meets the eye.