From Endurance Athlete to Advocate: How Trikafta is Rewriting the Future for Cystic Fibrosis
Kirsty Parsons, a 32-year-old from Taupō, New Zealand, is preparing to make history. On March 7, 2026, she will compete in Ironman New Zealand, aiming to become the first woman in the country with cystic fibrosis (CF) to complete the grueling event. Her journey isn’t just about personal achievement; it’s a powerful testament to the life-changing impact of the drug Trikafta and a beacon of hope for the CF community.
The Weight of Cystic Fibrosis: A Life Before Trikafta
For years, Kirsty Parsons lived with the daily realities of cystic fibrosis – a condition affecting approximately 500 New Zealanders. Before access to Trikafta, her life was significantly impacted. She spent the first half hour of each morning battling a persistent cough, faced frequent hospitalizations, and struggled with basic activities like walking to the supermarket. Her lung function was reduced to 40-50%. “It was pretty uncomfortable, and my quality of life wasn’t great,” Parsons shared.
Cystic fibrosis causes a buildup of thick mucus, primarily affecting the lungs and digestive system. While there is no cure, Trikafta addresses the underlying cause of the condition, offering a significant improvement in manageability.
A “New Shiny Body”: The Transformative Power of Trikafta
Parsons gained access to Trikafta in 2018 while living in England through a drug trial with Vertex Pharmaceuticals. The results were remarkable. “All of my symptoms kind of just dropped away within the week,” she explained. “It was like being picked up and put in a brand new shiny body where everything worked.”
Returning to New Zealand in 2021, Parsons continued to access the drug. Public funding for Trikafta became available in New Zealand for those aged six and over in April 2023, following advocacy efforts. Provisional funding was recently announced for children aged 2 to 5.
Ironman as a Full-Circle Moment
Competing in Ironman New Zealand is a deeply personal milestone for Parsons. As a teenager in 2008, she was introduced to the event through Cystic Fibrosis New Zealand (CFNZ), which sponsored Ironman New Zealand at the time. She ran down the finish chute alongside athlete Patrick Bristowe, an experience that sparked her long-standing connection to the race.
The Ironman consists of a 3.8km swim, a 180km cycle, and a 42.2km run. Parsons is currently training approximately 12 hours per week, having already completed 16km of swimming, 640km of cycling, and 83km of running in the past month.
Fundraising for a Cause and Inspiring Others
Parsons is using her Ironman campaign to fundraise for CFNZ, aiming to support individuals and families affected by cystic fibrosis. She is currently almost halfway to her initial goal of $10,000 and is considering increasing it to $20,000.
“Completing it would prove she had all the capabilities of a normal healthy person and I’m not limited by CF,” Parsons stated. She hopes her journey will motivate other young people with CF to pursue their goals and stay healthy.
A Community’s Support and Future Advocacy
Simone Brown, executive lead at CFNZ, emphasized the resilience of the CF community and the inspiring achievements of individuals like Parsons. “It not only demonstrates the strength and resilience of living with cystic fibrosis but shines a bright light on the potential life and future that our younger generations can look forward to and be inspired by.”
CFNZ continues to advocate for equitable access to all CFTR modulators, recognizing that Trikafta isn’t the only treatment option and that different individuals may benefit from different therapies.
Frequently Asked Questions
What is cystic fibrosis? Cystic fibrosis is a genetic condition that causes thick, sticky mucus to build up in the lungs and digestive system.
What does Trikafta do? Trikafta treats the underlying cause of cystic fibrosis, making the condition more manageable.
How can I support Kirsty Parsons’ fundraising efforts? You can donate to her Givealittle page: https://url.au.m.mimecastprotect.com/s/pHCACgZo1YcJXKVwsoh9I4i1ol?domain=givealittle.co.nz
Where can I learn more about Cystic Fibrosis New Zealand? Visit their website at https://www.cfnz.org.nz/
What is the Ironman New Zealand event? Ironman New Zealand is an endurance race consisting of a 3.8km swim, a 180km cycle, and a 42.2km run.
What are your thoughts on Kirsty’s incredible journey? Share your comments below!
Related reading