At various points in my life, I have faced ableist comments or reactions to my cystic fibrosis treatments, which have greatly affected me. I hope this blog post makes people more aware of the language they use toward people with chronic illnesses.
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My daughter, Desi, recently started school. Here's what we did to prepare her to manage her cystic fibrosis and navigate the COVID-19 pandemic — and what we learned in the process.
When I was in high school, I tried my best to hide my CF from my friends. When this put my health at risk, I knew I had to find friends who would accept me and to become a better advocate for myself.
My younger sister and I both have CF. Growing up, I tried to be a role model for her in managing the day-to-day challenges. Today, she is the one inspiring me.
Having to isolate from our loved ones after the birth of our first child -- right as the COVID-19 outbreak hit our community -- was doubly difficult, but with a little education, our support network came through for us.
The COVID-19 pandemic brought great challenges to cystic fibrosis care. As Michelle Prickett showed during plenary 1 of this year's North American Cystic Fibrosis Conference, CF care teams adapted to provide care and keep us safe. It also shows where CF care may be headed in the future.
Having a baby spend a long time in the NICU is difficult. Here are some things I learned about how to deal with it.
While waiting for another lung transplant, I learned that time is a wicked concept: there is so much of it, but never enough.
My wife and I opted for a surrogate to carry our child following her double-lung transplant. After five years of struggling with a bad surrogacy agency, we finally switched providers and found a surrogate who is now carrying our child.
After watching the second plenary of the 2021 North American Cystic Fibrosis Conference, I was incredibly impressed by the level of support the Cystic Fibrosis Foundation is providing to the development of the next generation of therapeutics. Developing genetic therapies -- especially those as complex as gene editing -- will take a long time and a lot of collaboration.