I live with cystic fibrosis and I'm training to row 3,200 miles across the Atlantic

23 May 2024

A patient with cystic fibrosis is aiming to become the first person with the rare disease to row across the Atlantic.

Sophie Pierce, along with two other women, will spend around 60 days rowing 3,200 miles from Lanzarote to Antigua to raise vital funds for the Cystic Fibrosis Trust, Emily’s Entourage and Paul Sartori Hospice at Home.

Not only will she have to contend with huge ocean waves, isolation and crippling fatigue, she’ll also have to manage her cystic fibrosis - including her strict medication regime - on board the 10m-long ocean boat.

The 31-year-old has been under the care of the All Wales Adult Cystic Fibrosis Centre, at University Hospital Llandough, for more than a decade and credits her stable condition to her multi-disciplinary team and access to a pioneering drug called Kaftrio.

“In doing the row, I want to showcase that people with cystic fibrosis can push themselves - and do more than society tells them they can,” she said. “Cystic fibrosis is a really harsh illness to live with, and so the people I’ve come across with the condition are some of the most resilient I’ve ever met.”

Sophie, from Haverfordwest, was diagnosed with cystic fibrosis at the age of just three months old. The potentially life-limiting condition causes the lungs and digestive system to get clogged with sticky mucus, making it hard to breathe and digest food.

“The longer I was living with cystic fibrosis, the more chest infections I was picking up,” she explained. “That has caused scarring on my lungs which results in irreversible lung damage. By the time I got to my mid 20s I was coming to hospital three to five times a year, for two weeks at a time, having intravenous antibiotics and my lung health was still declining.”

Throughout her life, Sophie has had to use nebulisers to help clear her lungs of mucus and take between 20 and 30 drugs a day. “I also have to take tablets every time I eat because my pancreas doesn’t work properly,” she added.

However, at the age of 27 things changed for the better for Sophie. Thanks to the research team at the All Wales Adult Cystic Fibrosis Centre, she was given access to a trial for the drug Kaftrio which has dramatically improved her overall health and quality of life.

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

Sophie has access to a multi-disciplinary team of professionals at the All Wales Adult Cystic Fibrosis Centre, including specialist nurses, ward staff, physiotherapists, consultants, dietitians, social workers and psychologists.

“It covers everything I need to live as well as I can with cystic fibrosis,” she said. “The staff are amazing, and a lot of them I’ve known since I first used the centre at the age of 18. Many of them I now consider friends.”

In January 2025, Sophie will embark on the Atlantic row alongside fellow Neyland Rowing Club members Janine Williams (who will be 70 years old when the challenge starts) and Polly Zipperlen – and training has already begun in earnest.

“We’ve got to turn ourselves into ocean rowers and get physically fit for the challenge. On top of that, we have to factor me living with cystic fibrosis and how I will manage to look after myself in a really harsh environment,” she said.

“We will have a fridge put on the ocean rowing boat for one of my medications, and the only power we’ll have is solar power. I’ll still have to do my daily nebulisers and take all my mediations during the row.”

Sophie explained that the boat will be at risk of capsizing when the waves are at their biggest. “Marlins also like to pierce holes in boats, which isn’t ideal given we’ll be in the middle of the Atlantic, on our own, having to deal with a boat repair to stop us from sinking,” she said.

“Sixty days confined to a 10m-long boat is a long time to be away from home comforts. Our communication, and morale, needs to be good throughout.”

One of the clinicians caring for Sophie at the All Wales Adult Cystic Fibrosis Centre is Jamie Duckers, who is also Health and Care Research Wales Speciality Lead for Respiratory and Clinical Lead for Rare Diseases across Wales.

“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,” he said.

“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.”

For more information on Sophie and her team’s challenge, called Cruising Free, please go here or here. To find out more about the All Wales Adult Cystic Fibrosis Centre at University Hospital Llandough please go here.