‘Live a full life – not in fear’, Isabelle tells others diagnosed with cystic fibrosis
Isabelle Rosamond wants to stop the stigma surrounding the disease.
A woman with cystic fibrosis is on a mission to help young people diagnosed with the disease realise they can still lead a full life.
Isabelle Rosamond, 27, said she was depressed and even suicidal during her teenage years because she felt there was no hope.
But now she says she doesn’t let cystic fibrosis hold her back – and is keen to provide help to others facing life with the condition.
“I want to try and stop this stigma around it so much,” she told the Cambridge Independent. “My main message would be to live your life how you wish to live it – don’t let it limit you and restrict you. And don’t think about this life expectancy hanging over you. Live your life and don’t live in fear.”
Isabelle, who grew up in Huntingdon, was diagnosed at birth.
“I think back then there were only three counties that tested for it at birth and Cambridgeshire was one of them. My parents didn’t know anything about it,” she said. “There are some people diagnosed very late on – I know someone who was diagnosed at 16.
“You are told your life expectancy is quite low. It’s quite depressing and horrible. Because people with cystic fibrosis are not allowed to interact with one another because of the risk of cross-infection, it’s difficult to see that you have any future.”
Cystic fibrosis is an incurable condition that causes the body to produce thick mucus, which affects the lungs and digestive system in particular. But with 1,400 possible mutations of the faulty gene that causes the condition, symptoms vary hugely from one patient to another.
The Cystic Fibrosis Trust notes: “These include poor lung function, frequent and persistent lung infections and the inability to effectively digest food, particularly fats. Additional complications include CF-related diabetes, bone disease and infertility.”
Isabelle said: “We carry a card with our gene type on. It says ‘What’s your size?’ – it’s about the fact that one size doesn’t fit all.
“We are deficient in a lot of vitamins. Some of us are diabetic and some of us have osteoporosis but as a child it’s not so bad.
“I have pill pots for a week at a time. We have nebulised antibiotics and have physiotherapy daily, which can take a bit of time.”
Physiotherapy is helps to reduce the build-up of mucus in the lungs, while oral enzymes help digest the fats in food and antibiotics are used to treat infections. A healthy diet and active lifestyle are vital.
Isabelle spoke to the Cambridge Independent from Papworth Hospital, where she was staying for a fortnight.
“A lot of patients get brought in to hospital for two weeks of treatment when they need it,” she said. “My lung function was 80 per cent but over six years it’s come down to between 60 and 70 per cent. They bring you in to give you a boost. My partner calls it my MoT…
“It’s a constant battle – lung function will constantly go down and eventually it will get to the point where you need a lung transplant.”
Life expectancy for people with CF varies and is improving. In 1964, children with the condition were lucky to live past five years old. Now, half of those in the UK will live past 41 and a baby born with CF today can expect to live longer.
Isabelle, who attended Buckden School and The Ivo School at St Ives, said the condition cast a shadow over her childhood.
“My parents would sit with me for hours trying to get me to eat. They didn’t really enjoy me because they didn’t know what consequences there were,” Isabelle recalled. “They wrapped me in bubble wrap because they didn’t know what would happen.
“I was very depressed when I was a child. I was suicidal because I didn’t think there was any point. At 15 I was told I was halfway through my life but I’m 27 now and I think I’m going to live my life twice over again before I go.
“The treatments are getting better and better for CF but we can live in fear. I don’t see the point of living until 70 if you can’t step outside your front door.
“I don’t let it restrict me. For the past six years I’ve not been admitted to hospital and that’s because I’ve been conforming to my medication – and a slight stubbornness.”
Isabelle has been busy studying for a business degree at the University of Hertfordshire and working in media sales. She is now a pensions administrator.
But she admits her determination to live a life unchained by CF did lead her into some danger.
“I went travelling when I was about 20 and that was ill-advised because I could have got infections from other countries that they don’t know how to treat. I went to Russia, Mongolia and China,” she said.
“I had one bag purely for medication and my other bag was half-full of medication. It was slightly terrifying! We did get stopped on the Chinese border and I think I was pretty close to being sent to jail because I wasn’t sure anyone could translate my medical records.
“I also melted my nebuliser when I was in Mongolia. I think my poor parents didn’t sleep well…”
Now she is keen to talk to others trying to come to terms with the condition, to share what she has learned.
“I’ve put something on the Cystic Fibrosis Trust’s website to say that I’m more than happy for any parents with CF to contact me and I’m happy for people with CF to contact me. I want to talk to people and give them that hope. I want to give them the will. I don’t want anyone to be limited,” she said.
Isabelle said she found Instagram inspirational.
“If you search for #cysticfibrosis or look for #CFwarriors there are a lot of people on there with CF who are fit,” she said.
One of these is fitness fanatic Josh Llewellyn-Jones, who trains for three hours a day to keep his CF at bay. He has just completed a 24-hour challenge in which he ran 10 miles, rowed 20 miles, cycled 100 miles, completed 10 miles of cross-training, swam two miles, lifted 100 tons and completed 3,000 sit-ups, 1,000 press-ups and 1,000 squats. He has raised £25,000 so far for the Cystic Fibrosis Trust.
“There are so many people with CF on Instagram who are living normal lives and I’ve found it so helpful to interact with them,” said Isabelle. “They’ve made it past that period where they feel there’s no hope.”
Now she aims to give hope to others.
“I spoke to somebody recently whose child was diagnosed with CF and she was really thankful that someone was able to help and give her that reassurance that they can live a ‘normal’ life,” she said. “I don’t want anyone to be limited.”
Isabelle can be found posting on Instagram @bellrose1990. For more information on cystic fibrosis, visit cysticfibrosis.org.uk.
Isabelle campaigns for Orkambi drug to help those with cystic fibrosis
Isabelle is supporting the efforts to encourage the government and NICE to make an effective new drug available on the NHS.
Orkambi (ivacaftor/lumacaftor) is the second precision medicine for cystic fibrosis that is licensed for use in the UK but it is not currently provided by the NHS, except in rare cases on compassionate grounds for those who are seriously ill.
It targets the F508del genetic mutation found in around half of those with cystic fibrosis in the UK, including Isabelle. Orkambi slows down the decline in lung function experienced by people with cystic fibrosis by an average of 42 per cent. It is thought it could help an estimated 3,296 people in the UK.
NICE, which determines which drugs should be made available on the NHS, concluded in 2016 that it was not cost-effective to provide Orkambi at a cost of £104,000 a year.
The Cystic Fibrosis Trust organised a day of protests on June 27, 2017, calling for the government and NHS to reach agreement with manufacturer Vertex Pharmaceuticals on the drug. A petition was also handed in calling on Vertex to make the drug affordable for the NHS. Vertex has said it is going to put forward an improved offer and the NHS has said it is willing to listen.
Isabelle said: “Anything that can help prolong someone’s life should be accessible to everyone. No one should be denied these types of treatments.”
One woman who has been granted access to the drug on compassionate grounds is Charlotte Joslin, from St Ives, whose lung function has gone from 30 per cent – which was getting close to a level where a transplant would be considered – to 74 per cent.