I struggled emotionally after learning that after negative carrier and newborn screens, my son had cystic fibrosis. I’m now advocating for people with rare mutations.
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My son, who is Black, has cystic fibrosis. It seems like just a normal fact of life, but I have become frustrated with having to convince doctors that he really does have CF. I hope that one day people of color won’t have to have the same experience.
We’re spotlighting six authors who have written books based on their experiences with cystic fibrosis. Check out what writing about CF has meant for them, and what they hope their readers will learn from reading their stories.
Coping with cystic fibrosis as a child led to depression. Creativity -- especially singing -- helped me find myself and led to my auditioning for The Voice Australia.
We’re highlighting six creators who are helping raise awareness of cystic fibrosis. By sharing parts of their life with CF on paper or on screen, they’re voicing the variety of ways that people experience the disease.
I felt so alone as a kid being gay and having CF — there weren’t any role models in the 80s and 90s that I could look up to. Eventually, I found people who understood what I was going through and that helped me feel good about who I was, and who I am today.
After years of being treated as an oddity, I want people to acknowledge that I am a Black girl with cystic fibrosis. I want my voice to be heard.
Watch our vlog to hear us discuss the upcoming film, Five Feet Apart.
Hear about our homepage hero, Jeremy Weyandt, and his journey to a lung transplant.