Site Search

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.

When I scroll through my social media accounts, it’s hard not to compare myself to other people and feel like I could have accomplished so much more had it not been for my cystic fibrosis. Instead of getting depressed, I now rely on therapy, positive affirmations, and being kind to myself to preserve my mental health

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.

As a person with cystic fibrosis, I used alcohol and drugs to fit in with my peers and cope with the hardships of having a chronic disease. I still struggle with sobriety, but I have taken control of my health and my life.

Since the loss of my sister to cystic fibrosis, grief has hit me in waves. Sometimes it feels as though I can't breathe. Despite this, I have been able to function and keep going. That is what Claire would have wanted me to do.

Having experienced loss before, I thought I knew how to process grief. But, when I lost my cousin to suicide and my grandmother to the pandemic this past year, I reacted in unexpected ways and learned new lessons about coping with grief.

As the mother of a toddler with cystic fibrosis, I found it hard to deal with the daily grind of treatments, appointments, and insurance claims on top of all other daily responsibilities. After months of suicidal thoughts, I finally reached out for help.

Despite letting negative thoughts get to me when I was younger, I learned to make the most of any situation. This positive mindset has helped me succeed in college, and I want to help pass along what I have learned.

Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.

Understanding that I suffered trauma from medical encounters during my childhood helped make me a more effective self-advocate as an adult.