When Laura Visick turned 30, she didn’t have a big celebration.
Having cystic fibrosis meant, heartbreakingly, she was expecting to die at 31 — the average life expectancy when she was born with the cruel condition.
And never once did she envisage having children of her own.
Yet a miracle drug has allowed Mrs Visick to defy her bleak prognosis, transforming her life so drastically that now even has an 11-month-old son.
Agonising symptoms vanished almost overnight thanks to Kaftrio, which respiratory experts have hailed as ‘almost a cure’.
Laura Visick is pictured on holiday in Sri Lanka with her baby boy Lucas when he was five months old
Mrs Visick, now 33, who works as an advertising director and lives in Surrey, says growing up with cystic fibrosis (CF) was ‘pretty all consuming’.
Never-ending hospital trips forced her miss months of schooling. On top of that, she had to take 40 tablets each day and undergo two bouts of physiotherapy just to keep her lungs healthy.
Friends struck by the same incurable condition died in their early twenties. Others were so ill they needed lung transplants.
‘Cystic fibrosis is historically a young person’s condition’, Mrs Visick told MailOnline.
The condition — which affects 11,000 people in the UK — is usually detected at birth using a newborn screening heel prick test.
It is caused by faulty gene which a child inherits from both parents, which makes it difficult for cells to move water and salt in and out of cells.
As a result, the body produces thick, sticky mucus that clogs the digestive system, creating problems with food absorption, and the lungs, which results in infections and scarring that gradually reduces patients’ ability to breathe.
This slow suffocation is often what ultimately kills.
Treatment advances over the past four decades have boosted life expectancy – as recently as the 1970s, few people with cystic fibrosis lived beyond their teens.
Mrs Visick was determined to have as normal a life as possible and taking Kaftrio provided predictability and increased her lung function by 60 per cent
Kids born with CF now can expect to live into their 50s, according to Cystic Fibrosis Foundation.
Yet even with the approval of Kaftrio, drugs still can only ease symptoms.
Deteriorations in her health as a teen, which saw her hospitalised with recurrent lung infections, left her uncertain if she’d even reach her thirties.
Mrs Visick was, however, determined to live as normal a life as possible.
‘I went to university, I had relationships, I travelled, I got a job, I married and bought a house,’ she told MailOnline. ‘As much as I could, I lived as though I didn’t have cystic fibrosis.
‘I think that was my coping mechanism.
‘I knew I didn’t want my cystic fibrosis to dictate my life. Even if it was bound to be shorter than other people, I didn’t want to do life any differently.’
After meeting her husband Charlie at 25, she constantly thought about having kids but believed she had a slim chance of becoming pregnant. What’s more, Mrs Visick worried about not being around to see her children grow up.
Many women with CF can carry a child without significantly damaging their health — but it is not without its risks.
Declining lung function and impaired nutrition, caused by a build up of mucus in the airways and digestive system, can heighten the odds of having a premature birth.
Further complicating her desire to have children, in 2018 Mrs Visick contracted non-tuberculous mycobacterial (NTM).
The rare bacterial lung infection mainly affects people who already have damaged lungs and can cause a cough, fever and weight loss.
Mrs Visick was given antibiotics to take daily, none of which were safe to be on while pregnant because they can cause deafness and have been linked to spina bifida.
At this point, the couple began to think about adopting.
In June 2020, Mrs Visick spent three weeks in hospital for an IV antibiotic treatment for her non-tuberculous mycobacterial (NTM)
But in June 2020, Mrs Visick spent three weeks in hospital undergoing treatment for her NTM flare-up.
Her treatment, which was ‘incredibly intense’, caused her to lose a huge amount of weight and develop a form of heart failure.
But while in hospital, NHS watchdogs approved Kaftrio, which gave her a glimmer of hope. The drug was then dished out in the UK in August 2020.
In September, Mrs Visick received a call from a nurse offering her Kaftrio.
Scientific trials proved it could boost lung function, making it easier for sufferers to breathe and consequentially enhancing their quality of life.
Kaftrio, made by British-based pharmaceutical firm Vertex, corrects problems with proteins on the surface of cells that line the gut and airways, and in other places, so that they produce normal mucus.
Experts are hopeful the triple therapy — which combines ivacaftor, tezacaftor and elexacaftor — will add decades to the lives of people with cystic fibrosis.
Mrs Visick says the tablet, taken twice a day, has undoubtedly been life-changing.
After decades of ‘painful, unpleasant, long and suboptimal’ treatment, she says it is ‘bonkers’ that a pill has had the biggest effect.
She was able to gain weight, her persistent cough disappeared and she was able to carry out everyday tasks.
After taking Kaftrio, Laura noticed a difference almost immediately. Here, pictured a month after getting Kaftrio with her husband Charlie, she already has better lung function
It’s hoped the drug Kaftrio, pictured, which is a triple therapy — which combines three compounds, ivacaftor, tezacaftor and elexacaftor — will add decades to the lives of people with cystic fibrosis
Mrs Visick says the drug provided predictability and increased her lung function to around 60 per cent. Before she was given the drug, some days she would feel like she could go for a run and others she would struggle to walk up the stairs.
While she and her husband Charlie had been considering adoption, the drug allowed her to consider pregnancy.
She made the decision to come off antibiotics — which patients take to fight off respiratory infections— in December 2021 and in March 2022 found out she was pregnant.
‘I came off the drugs, we did a load of scans and we waited three months. We had a baby, we planned it and it worked,’ Mrs Visick told MailOnline.
‘We worked hard with my team [of medics] for a good two years to get to the point of even being able to try.’
During her pregnancy, she was unable to have any CT scans — a policy that aims to minimise unborn children’s exposure to radiation. It meant she had no idea if her CF was progressing.
‘We were blind for nine months and that was that was scary for everyone because we did not know what it was going to look like on the other side,’ she said.
But she gave birth in November 2022 and her baby boy Lucas is now 11 months, and healthy.
Tests showed her lung health remained stable throughout, despite not taking any of her antibiotics.
Before her pregnancy, Mrs Visick’s relationship with her body was ‘complex’.
‘It’s not always played ball,’ she said. ‘I have missed birthdays, Christmases, holidays, I’ve spent so long in hospital, and it’s let me down time and time again.’
But over the course of her journey carrying Lucas, she found a whole new ‘profound’ appreciation for her body.
‘I realised my body can do this,’ she said.
‘I just felt very privileged to even be able to be pregnant and the fact that I was able to cope with it relatively well.’
Mrs Visick, husband Charlie and baby Lucas pictured on their first family Christmas
Kaftrio’s success has led to a surge in women with CF becoming pregnant, so much so that the Royal Brompton Hospital in London has now opened a special antenatal clinic just for cystic fibrosis parents, which is the first one of its kind.
‘I find fascinating to just be handed this time. And not so much for me, but for the people that really didn’t have much time left, to suddenly be handed it is kind of crazy’, she says.
However, the miracle drug, like all medication, isn’t without side effects.
Kaftrio, as well as similar drugs Symkevi, Orkambi and Kalydeco, have been linked with depression, anxiety and suicidal thoughts.
‘There’s been a lot of people who have had quite a lot of challenges with their mental health and perspective, because it’s not a shift they thought was going to come’, Mrs Visick said.
‘They have been a sick person their whole life, it was almost part of their identity, and suddenly, they’re not so sick anymore.
‘It can be really hard for people who are then expected to integrate with life a little bit more, rather than be a sick person.’
WHAT IS CYSTIC FIBROSIS?
Cystic fibrosis is an incurable genetic disease that affects around 70,000 people worldwide and more than 10,900 people in the UK.
You are born with CF and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without knowing.
The defective gene causes a build-up of mucus in the airways, making it increasingly difficult to breathe over time.
Mucus also blocks the natural release of digestive enzymes, meaning the body does not break down food as it should.
Signs and symptoms:
A persistent cough that produces thick mucus (sputum)WheezingBreathlessnessExercise intoleranceRepeated lung infectionsInflamed nasal passages or a stuffy nose
While healthy people cough naturally, that does not happen for people with CF.
Eventually, lung function depletes to the point that sufferers will need a double lung transplant to survive.
How is cystic fibrosis treated?
Medicines including CFTR modulators like Kaftrio, Symkevi, Orkambi and Kalydeco are used to treat CF.
Kaftrio is first triple combination therapy to treat the cause of CF. It is licensed for people with CF aged 6 years and older, with at least one F508del mutation.
Physiotherapy is also important for airway clearance to help loosen and remove the mucus that builds up in the lungs, or maintaining good posture to avoid back problems that can have a negative impact on lung function.
Exercise can also help clear mucus from the lungs, improve physical bulk and strength, and help improve overall health.
A person with CF needs to have a balanced diet, but may also need to calories to maintain a healthy body weight.
How does CF affect female fertility?
Women with CF are more likely to experience irregular periods or the absence of their period altogether, particularly if ill or very underweight.
This means they may not ovulate (produce an egg for fertilisation) each month.
Women with CF may also have thicker vaginal mucus, which can make it harder for the sperm to reach the egg.
Source: Cystic Fibrosis Foundation and Cystic Fibrosis Trust
