All posts tagged: fibrosis

Man to cycle 530 kilometres to save cystic fibrosis sufferers | UK | News

Man to cycle 530 kilometres to save cystic fibrosis sufferers | UK | News

Published by skeptic

Devoted dad Bob Clarke is cycling 530 kilometres from Vietnam’s Ho Chi Minh To Angkor Wat in Cambodia … to save cystic fibrosis patients like his treasured daughter.  And CF-sufferer Sophie Clarke, 29, has told the Daily Express how her dad is a “hero” after raising over £32,000 over the years for the Cystic Fibrosis Trust charity with a series of tough challenges.  Now CF sufferers can take NHS wonder drugs like Kaftrio to alleviate the worst symptoms of the disease – but when Sophie was growing up there were none – and 12 years ago aged 17 she needed a double lung transplant. Over the years father-of-two Bob, 61, has vowed to help the generation of sufferers and in September he’s cycling over tough terrain in 12 days from Vietnam to Cambodia, to raise over £3,000 for the CF Trust. Dad Bob Clarke on one of his cycling challenges (Image: handout) Bob, of Tunbridge Wells, Kent, told us: “When Sophie was born it was a time when there were no treatments to help with …

Cystic fibrosis sufferer to run half-marathon for her lost sibling | UK | News

Cystic fibrosis sufferer to run half-marathon for her lost sibling | UK | News

Published by skeptic

A cystic fibrosis sufferer with soaring health thanks to a wonder pill is now running in memory of her lost sister – who tragically died from the cruel condition before getting the drug.  Devoted siblings Sophie and Danielle Jones, of Telford, Shropshire, were both born with CF which could dramatically shorten lives by clogging up lungs with sticky mucus in the days before new NHS miracle medications.  In 2017 Sophie, then 16, and seriously-ill Danielle, 19, were gifted dream days out by charity Rays of Sunshine – Sophie having a pamper session while Danielle got to meet ‘Geordie Shore’ reality TV stars Holly Hagan and Charlotte Crosby. Later that year, after two years on the lung transplant list, Danielle passed away – but luck shielded her grieving sister as in 2020 wonder drug Kaftrio became available on the NHS after a campaign by the Daily Express. Now Kaftrio’s seen 23 year-old Sophie’s health soar enough for her to run the Birmingham Half Marathon in May for Rays of Sunshine in memory of her sister – …

The Cystic Fibrosis Breakthrough That Changed Everything

The Cystic Fibrosis Breakthrough That Changed Everything

Published by skeptic

They call it the Purge. You have experienced, in a modest way, something like it in the waning days of a bad cold, when your lungs finally expel their accumulated gunk. The rattle in your chest quiets. Your sinuses clear. You smell again: the animal sweetness of your children’s hair, the metallic breeze stirring a late-summer night. Your body, which oozed and groaned under the yoke of illness, is now a perfectly humming machine. Living is easy—everything is easy. How wonderful it is to breathe, simply breathe. Explore the April 2024 Issue Check out more from this issue and find your next story to read. View More Imagine, though, that you had never been able to simply breathe. Imagine that mucus—thick, copious, dark—had been accumulating since the moment you were born, thwarting air and trapping microbes to fester inside your lungs. That you spent an hour each day physically pounding the mucus out of your airways, but even then, your lung function would spiral only downward, in what amounted to a long, slow asphyxiation. This …

Musician with cystic fibrosis credits ‘miracle’ drug for changing her life overnight and gives birth to healthy baby boy

Musician with cystic fibrosis credits ‘miracle’ drug for changing her life overnight and gives birth to healthy baby boy

Published by skeptic

Live your life healthier and happier with our free Living Well newsletter, packed with wellness advice, practical tips and nutritious recipes Live your life healthier and happier with our free weekly Living Well newsletter A woman with cystic fibrosis who was told “you haven’t got many years to live” in her early 20s when her lung function dropped to 25 per cent and thought she would never start a family due to her reduced life expectancy has credited a “miracle” drug for changing her life overnight and allowing her to give birth to a healthy baby boy. Bryony Prior, 29, was diagnosed with cystic fibrosis (CF) – a genetic condition which causes sticky mucus to build up in the lungs and digestive system – when she was six. The musician, who lives in Kent, took medication and used inhalers and nebulisers – machines which allow people to breathe in medicine – to manage the condition and her lung function, but her health started deteriorating in her late teenage years while studying the French horn at …

I have cystic fibrosis but experts say drugs for others like me are too expensive. What price a life? | Johanna Tate

Published by Sam

When I was born in 1990, the life expectancy of people with cystic fibrosis was about 40. I was diagnosed when I was just six months old, and my parents were told then their daughter would have a very different kind of life. Cystic fibrosis (CF) is a genetic disease that causes the body to produce thick mucus, affecting mainly the lungs and digestive system. Growing up, my condition had been well managed, but in my 20s that changed and I began to deteriorate. I remember not knowing what my laugh sounded like, because whenever I found something funny I would descend into a painful coughing fit, rather than a fit of giggles. I remember the hours of physiotherapy, my daily medications – each with their own side-effects – and the trips in and out of hospital. But mostly I remember the fear. Fear of the future, fear of leaving loved ones behind, fear of becoming a burden as I continued to deteriorate. But one night in late 2019, my CF nurse gave me a …

‘I was born with death as my sidekick’: the ‘zombie’ with cystic fibrosis who turns pain into art | Art

Published by Sam

It’s not often you meet someone who self-identifies as a zombie. Are your pronouns he, she, they – or it, I ask. “Let’s go with ‘it’!” laughs Martin O’Brien, the most jovial zombie you could hope to meet. He (the pronoun he actually uses) is serving tea and Tunnock’s tea cakes on a hospital trolley in his studio in an LGBTQ+ art space in south London. On shelves are large fake shark’s heads (“my beautiful babies!”), and the wall boasts a picture of O’Brien naked, pretending to nail his penis to a table – a homage to his artistic forefather, the late Bob Flanagan (who did it for real, while singing If I Had a Hammer, in a work called Nailed). A performance artist from Burnley, with a strong Lancashire accent, O’Brien calls himself a zombie because he has outlived his life expectancy as a person with cystic fibrosis. When he was born in 1987, people afflicted by his incurable condition, which clogs the lungs and other vital organs with mucus, were unlikely to live …