I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
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My wife and I were heartbroken when our daughter, Ruth, was diagnosed with cystic fibrosis as a newborn. But CF can’t stop us from being optimistic about what the future holds for our family.
Advances in cystic fibrosis care have been life-changing for me, and I’m grateful to breathe easier with a CFTR modulator. However, I began to experience new issues in the past few years, and I am left wondering if it’s a side effect of the CFTR modulator or something else.
Advocacy is impactful at all ages, but the term can sound intimidating. It implies effort, time, commitment, politics, and publicity. As a 30-year-old with cystic fibrosis, I am currently an active member of the CF community, but I was not always aware of the benefits, power, and impact of advocacy.
Cystic fibrosis defined my identity for many years until I participated in clinical trials for Trikafta®. As my health improved, I struggled to figure out what this meant for my sense of self. This experience motivated me to help other young adults with CF navigate the many changes that modulators can bring.
If you receive financial assistance from Vertex GPS™ for a modulator therapy (e.g., Trikafta®, Symdeko®, Orkambi®, or Kalydeco®), you may be impacted by changes Vertex has made to its copay assistance program. The following tips can help you understand how you may be impacted and what next steps may be available to you.
The excitement we experienced anticipating our daughter, Tegan, starting Trikafta® gave way to sadness and confusion as she experienced emotional side effects.
On the brink of being listed for lung transplant, I started Trikafta®, which has helped stabilize my health and helped me avoid it for now, but a transplant could be in my future.
Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients.