‘I’m 18, I should be healthy and thriving at college, but I’m not because every day is a battle with cystic fibrosis’

A musical theatre student with cystic fibrosis (CF), whose extreme exhaustion, medication and reduced lung capacity make her feel like she is “fighting for (her) life” while performing, is among the 10% of patients who are ineligible for “miracle” medication – but she does not want to get left behind.

Abi Holmes, 18, who lives in Bognor Regis, West Sussex, was diagnosed with CF – a genetic condition which causes sticky mucus to build up in the lungs and digestive system – when she was five months old.

Growing up, she used nebulisers – machines that allow you to breathe in medicine – and took tablets every day, but because she participated in sports and activities such as gymnastics and dancing, she remained relatively healthy and had a “high lung function” for many years.

In secondary school, her health significantly deteriorated, however, and hospital visits increased from once to four times a year due to Abi contracting chest infections.

Now she takes 30 or more tablets per day, endures coughing fits during her dance lessons and sometimes has to learn her lines from a hospital bed as she tries to follow her passion.

There are life-changing drugs such as Kaftrio, which significantly improves lung function, but Abi is among the 10% of patients who are ineligible for the medicine due to her genotype.

“I was very confused on why I couldn’t have it and everyone else could,” Abi told PA Real Life.

“Coming to terms with my illness when I was 12 and understanding what it was going to mean for my future was extremely difficult… and now it’s just a constant battle.”

CF is an inherited condition, and while treatments are available, life expectancy is shortened.

Given Abi is ineligible for certain medications and she is now allergic to eight oral antibiotics, her options are limited and every day is a challenge as her CF makes her feel extremely fatigued and she is regularly fighting off infections.

While Abi’s CF feels “defeating” at times, she has dreams of one day going travelling, attending stage school, working on cruise ships and even performing on the West End in London.

She is supported by her family, but her biggest hope is that she helps others “in the 10%” feel less alone and new treatments are introduced to improve and extend her life.

“When you know that you’re not going to live ’til you’re 90, it feels like a death sentence in a way, so I just try to live each day,” Abi said.

“When I can’t, when I’m in hospital, it’s so defeating because I just want to be healthy and be out there.

“With my musical theatre, I want it so much. That’s what gives me the drive to be the best that I can.

“I want to show people in the 10% that I’m doing it, I’m trying to get the word out there, and I will always advocate for us.”

Abi’s CF did not start to impact her life significantly until her first major hospital visit, aged 11, when she contracted a serious chest infection.

She underwent a bronchoscopy – a procedure to look directly at the airways in the lungs – and remained in hospital for a fortnight while she was treated with IV antibiotics.

Given doctors had said she was healthy growing up, she assumed she would stay that way “forever” – but now, as her health has declined, she feels “more alone than ever”.

“It’s so lonely, especially when you’re 18,” Abi explained.

“I’m not really one to go out partying or anything, I don’t think I’ve even been to one nightclub, but I’m more scared by my health now and I’m very conscious of everything I do.”

Abi loves going for long walks, visiting local, pretty villages, and doing musical theatre, but she said she has to try “so much harder” than her peers at college.

She explained that other students’ “100% is like (her) 50%” due to her exhaustion and reduced lung capacity – and she feels she has to fight for her life doing what she loves.

She has had to learn her lines and sing songs quietly while in hospital, but given her illness is “invisible”, many people do not understand the daily struggles she faces.

“I can just start randomly having a coughing fit during dance lessons, which I find so embarrassing, or my body will literally give way,” she said.

“I never let it get to me in classes, and I try not to let it get in the way of anything I do.

“I played the lead role in Legally Blonde in first year, and I don’t know how I got it, but that was literally so difficult.

“I loved it, I loved every second of it, but I had to put my absolute all into it that; I was just constantly fighting for my life doing it.”

Abi explained that she is in “constant fear” of contracting infections or being admitted to hospital, as this is a complete setback, but this is made all the more difficult because she does not know when the next new drug will be announced and whether she will be eligible for it.

She feels she is dealing with her “own illness” due to the fact she remains among the 10% of people who are not eligible for certain treatments, and she said she does not have anyone she can talk or relate to, meaning she has struggled maintaining stable friendship groups.

Her CF has caused her to miss classes and shows and it has also impacted her employment, meaning she now claims personal independence payment (PIP) as a benefit.

She has had around six different jobs in the last two years, and even though she knows this is “not (her) fault” and is due to her health, this only adds to her frustration.

“I just think I’m so tired of it now that I don’t really have any to talk to about it, anyone to relate to,” she said.

“It feels like I’ve got cystic fibrosis, but I’ve got a different illness now; it feels like I’ve got my own illness that I’m dealing with.

“I don’t see anything about the 10%, I don’t see any stories, I just see stories now of people who are constantly in hospital or who have had Kaftrio and are amazing and thriving.

“I couldn’t be happier for those people, but it does suck because you just feel like you’re completely alone in everything.”

Abi explained that she regularly has cannulas and peripherally inserted central catheter (PICC) lines inserted into her body to administer medications, meaning her “veins are just blown out”, she has to use multiple nebulisers every day and she takes 30 or more different tablets daily.

She also takes antibiotics every six hours, meaning she has to set regular alarms throughout the day, along with Creon, which aids digestion.

“There’s never a day where I don’t see a tablet,” she said.

While Abi is “restricted” in many ways, her passion for musical theatre and her drive to help others keeps her going.

She wants to campaign for more support, funding and treatment for those with CF “in the 10%”, as she does not want anyone to feel like they are alone or being left behind.

“I feel like if I just keep letting things happen the way they are, nothing’s going to change,” she explained.

“I hope by talking about CF more, it will be brought to the surface, more funding and treatments will become available, and we won’t get left in the past.”

For more information or support, visit the Cystic Fibrosis Trust’s website here: cysticfibrosis.org.uk