I wish people knew that even if I don’t look sick, I still struggle with the mental and physical aspects of cystic fibrosis. Even my family and friends don’t truly understand what this disease does to your mental health.
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We knew nothing about cystic fibrosis when my first daughter was born with the disease. We quickly became experts and took on the responsibility of educating our friends and family about what our daughter needed to stay healthy and thrive.
My daughter was born with cystic fibrosis and with an aversion to food. Teaching her to enjoy meals has been crucial to helping her grow and stay healthy.
Although the initial diagnosis for cystic fibrosis seemed to elude our doctors, we knew in our hearts that our son had cystic fibrosis. When we advocated for and got a CF doctor, we began a relationship that became a partnership of mutual trust and respect.
Even though Trikafta saved my life, I am still dealing with the emotional trauma of being so close to death and missing the person I was before I got so sick.
On our journey to become parents, my wife and I experienced several disappointments and began to question the entire process. Meeting our daughters made it worthwhile.
I initially struggled with how to share about my cystic fibrosis with people I met when I started college. Here’s what I learned.
Because my husband has cystic fibrosis, I take extra precautions to protect him from COVID-19 exposure. That is why I can’t continue to have relationships with friends and family who refuse to get vaccines or wear masks. They are putting my husband -- and others like him -- at risk.
Because I am immunocompromised after having a lung transplant, I still take extra precautions with COVID-19. I still feel awkward with turning down invitations and limiting my own guest list at gatherings, but I know my closest family and friends understand and do whatever they can to accommodate me.
We asked three people in the CF community to share their favorite sessions from this year’s North American Cystic Fibrosis Conference.