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4th June 2024

Cystic fibrosis research empowers Sophie to conquer Atlantic rowing challenge

A brave cystic fibrosis patient from Haverfordwest who has been under the care of a specialist research team for more than a decade is defying the odds by rowing across the Atlantic Ocean.

Sophie Pierce, 31, is determined to become the first person with cystic fibrosis to complete the challenge, after taking part in pioneering medical research at the All Wales Adult Cystic Fibrosis Centre at University Hospital Llandough, led by Health and Care Research Wales Specialty Lead for Respiratory Dr Jamie Duckers.

As part of the trial, Sophie was given access to a drug which has dramatically improved her lung function. Together with two other women, she will spend approximately 60 days rowing 3,200 miles from Lanzarote to Antigua to raise funds for the Cystic Fibrosis Trust, Emily’s Entourage and Paul Sartori Hospice at Home.

She said: “Cystic fibrosis is a really harsh illness to live with, but the people I’ve come across with the condition are some of the most resilient I’ve ever met.

“The amount of treatments I need has significantly reduced, and my health is far more stable now. I now have antibiotics in the hospital maybe once a year at most, and day to day my health is much more predictable.

“In doing the row, I want to showcase that people with cystic fibrosis can push themselves – and sometimes do more than society tells them they can.”

Cystic fibrosis causes sticky mucus to clog the lungs and digestive system, making it hard to breathe and break down food.

Sophie was diagnosed with cystic fibrosis at three months old. Throughout her adult life, Sophie has relied on nebulisers to clear her lungs and takes 20 to 30 medications daily.

However, at 27, things improved dramatically when she gained access to a trial for Kaftrio, a drug that significantly enhanced her lung function.

Dr Duckers added: “Sophie is an extraordinary example of how having a rare disease like cystic fibrosis doesn’t stop you from becoming a world first in something.

“She has taken part in various cystic fibrosis research studies including trialling new drugs, care and equipment to help improve the life of those living with the condition today and in the future.

“Children born with cystic fibrosis in the 1940s would often not reach their first birthday. Now thanks to the power of the cystic fibrosis community, advances in care, data and life-saving research like ours, people born with the condition today are now expected live a full life and plan their retirement.

At the All Wales Adult Cystic Fibrosis Centre in University Hospital Llandough, we are opening genetic therapy trials and have been at the heart of ground-breaking research trials of new drugs and artificial intelligence technologies which could predict respiratory flare-ups before patients and clinical teams become aware.

“We’ve come so far but there’s still loads more we can do, and we rely on people like Sophie raising awareness and participating in research studies to help with our advancements.”