Many people with cystic fibrosis are counting on cystic fibrosis transmembrane conductance regulator modulators to improve their overall health. I'm learning that they have effects I hadn't counted on.
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As the parents of two children with cystic fibrosis, we survived every parent's nightmare -- the loss of a child. Alyssa, our 29-year-old daughter, died in March 2018 after two failed double-lung transplants. We don't question why, because there is no acceptable answer. We just soldier on and fight for our son.
The convenience of growing up and living in a small town is that everyone knows your cystic fibrosis story. But, moving to a new city doesn't mean you have to greet everyone with a monologue about your illness. Wait until CF creates an opening.
I've learned to stop feeling guilty about all that I can't do and to focus on making a larger impact with the things that I can.
Taking a therapeutic writing course helped me cope with my cystic fibrosis, which also helped me connect more strongly to the CF community.
Losing my brother when I was just a teenager left me feeling isolated in my grief. There was no internet or social media in the 1980s to connect with other people with CF. Therapy and time eventually allowed me to cope with his loss, open up to family and friends, and invite them to share in my memories.
As a child, I mourned the loss of my sister and brother to cystic fibrosis, so much so that I avoided any and all things that had to do with CF. Last year, a person with CF helped me confront that fear, leading to an unexpected, but cathartic, outpouring of grief.
To my body: we've been through so much and cystic fibrosis has beaten us down, but I want to thank you for never giving up on me.
Being born prematurely and facing a lifelong disease could have made me bitter and angry for my whole life. While there are some bad days mixed in, I have, instead, made it my goal to always be kind and considerate to the people in my life.
After careful thought, I decided to add medically prescribed cannabis to my care regimen. After using it for six months, I've noticed an improvement in both my mental and physical health.