Latest news with #YvonneHughes
BBC News
6 days ago
- Health
- BBC News
'I made plans for my own funeral - now I'm on stage at the Fringe'
Five years ago Yvonne Hughes was planning her own thought that years later she would not only still be alive, but standing on stage performing comedy at the Edinburgh Fringe would have seemed a bad Glaswegian was diagnosed with cystic fibrosis when just a baby, meaning she suffered breathing and digestive problems throughout her told BBC Radio Scotland's Mornings programme that by 2020 "it had been a miracle to get to my mid 40s" given the mortality rate of the disorder. However a new drug - kaftrio - has completely changed her life since then, and given her hope for the to that point has been a long and often upsetting road, though. "People were dying around me when I was young, like my friends I'd been going to Yorkhill children's hospital with', she told Mornings host Connie McLaughlin."I kept going but as I got older the disease started to take more effect. I liked things like dancing, swimming and going to Brownies, but every now and then I'd fall ill and have to go into hospital."Making life even harder for Yvonne was medical research that found cystic fibrosis patients should be kept away from each other. "We grow bacteria in our lungs that can be dangerous to other people with CF," she said. "It's the same way that something like Covid would spread, just spreading bacteria amongst us. "Science caught up to that and told us you can't mix anymore, so we are the only disease group where we are encouraged not to mix with others." Survivor's guilt Yvonne recalled standing in a church when she was aged about 20, at the funeral of a childhood friend who had died from cystic said she realised at that point the condition was terminal, and was in tears for days afterwards."I think I've got survivor's guilt in a way," she said. When Yvonne was a child, the average life expectancy for patients with the condition was 31, meaning that by the time she reached her 40s, she had already outlived those early expectations. Despite medical developments that had raised the average life expectancy, Yvonne's lung function had declined to about 30% of what she felt she would not be able to qualify for any new drugs being developed."We knew these miracles were happening [with new treatments] but I thought I was too ill to benefit. I'd made plans for my funeral with my family."It had been a miracle to get to my mid 40s."But by 2020 kaftrio had been approved for use in Scotland - a modular drug that works to treat the root cause of the illness by bypassing the genetic errors responsible for the stresses that kaftrio is not a miracle drug and does not work for everybody, but for her, the effect was instantaneous. Energy levels Within hours she was coughing up mucus, and as the days went on she felt her energy levels rising again."The drug needs to be taken with fatty foods, so my dad had to go out and blow the budget on them for me to take it."I just remember I opened the door to the delivery guy and said 'you're about to save my life' – and it did. It's five years later and now I'm at the Fringe, it's bonkers." Inspired by her new-found energy, Yvonne took up a course for comedy at a university's centre for lifelong learning. That led to her own shows, and this year's Fringe effort - Absolutely Riddled - which works in her health struggles as part of the might not sound a recipe for easy laughs, but Yvonne believes it is a "warm and life affirming" show, which runs until 15 added: "I was in and out of hospital every six to eight weeks before. Now I've got all this energy - sometimes I forgot I've had something wrong with me." What is cystic fibrosis? Cystic fibrosis is the most common inherited life-threatening condition in the affects the ability of cells to transport salt and water which can cause sticky mucus to build can affect several organs but especially the lungs and the digestive usually appear in childhood and can vary with affected organs becoming the average life expectancy has steadily increased since the 1970s.
The Guardian
30-07-2025
- Health
- The Guardian
I spent my childhood in and out of hospital. At 19, I finally realised I had a terminal disease
Yvonne Hughes was 19, and attending the funeral of a friend with cystic fibrosis, when she realised: 'Oh shit, I'm going to die of this.' She had met him during shared hospital stays in childhood, and although Hughes had always known she had CF, she had never understood her illness as terminal until that day in 1992, when she stood at the back of the crowded chapel in Glasgow. For three days afterwards, she couldn't stop crying. 'I had a kind of meltdown. That's probably the first time I thought that this thing I had was going to kill me.' Over the next few months, Hughes, who was studying at the University of Glasgow, listened to her mum, dad and older sister chatting during family meals as if she was a ghost at the table. 'I pulled back from them. I deliberately didn't talk or include myself,' she says. 'I wanted them to get used to sitting and chatting without me, so that when I died, they wouldn't notice I wasn't there.' It's a harrowing responsibility for a teenager to take, but self-erasure must have felt like a way to pre-empt death, perhaps to resist it. When she was growing up, cystic fibrosis was considered 'a childhood disease' – because about half of those diagnosed did not survive their teens. A genetic condition in which the body creates thick, sticky mucus, it makes digestion difficult, damages lung function and can lead to respiratory failure. It affects about 160,000 people globally. Now 52, and enjoying what she calls a 'second chance' at life more than 30 years later, Hughes has emerged as a comedian. We are speaking on a video call before her one-hour show, Absolutely Riddled, which she is performing at the Edinburgh fringe, based on her experiences of living with the condition. 'I want to be true to myself and my story,' she says. Why does she think she survived when so many didn't? For most of her childhood, Hughes, who works as a community development worker in Renfrewshire, didn't regard herself as struggling for survival. Her parents didn't sit her down in childhood to explain her illness; she had been diagnosed at six weeks old. But there were hospital visits and tablets and eating often made her vomit. Gradually, she says, she 'put together those two words, cystic and fibrosis, with something that I had'. At school, she kept her illness hidden, taking her medication at home. She was popular; joined the Brownies, then Guides. 'I'm a very level-headed person, but I keep a lot in my mind. I remember when I was younger thinking: 'There's no point telling people about this because everyone is dealing with something. I'm nothing special.' I just got on with it.' Roughly one in every 2,500 people are born with cystic fibrosis in the UK, Australia and the US. Hughes's older sister does not have the illness and the family had no idea what it meant for their lives, or for Hughes herself. Only as she grew older did Hughes build a sense of the precariousness of her life. 'My mum said to me: 'We thought you were going to die, every day. We just didn't know.' It became their new normal to keep me alive.' If she got a chest infection, pleurisy or pneumonia, she would go into hospital, and over the years made friends on the CF ward, a fragile community. When the curtains were closed around a bed for a long time, Hughes and the other children knew not to go past. She reasoned with herself, to allay her fears: 'People were dying around me but I put it down to: 'Maybe they had a really bad infection, maybe they were worse than me.'' In childhood, she developed 'a lot of level-headed thought processes around why those people died'. She found solace in the Cystic Fibrosis Trust magazine, and dreamed of attending one of the advertised camps. 'Luckily, I didn't,' she says, because in the early 1990s, scientists discovered that the camps were a hotbed for the spread of bacteria, present in the lungs and phlegm of children with CF. Many cross-infected each other, some with fatal consequences. Did Hughes struggle to accept that sense of herself, as both vulnerable and a threat? 'Absolutely,' she says. Hospitals implemented a policy of segregation, according to bacteria carried. Hughes has the pseudomonas bacteria, and after her friend's funeral in 1992, she stopped seeing people with cystic fibrosis in case they had different bacteria or bugs that might lead to cross-infection. She has stayed in touch by phone with one old friend. 'We shared growing up in the hospital ward and I do love speaking to him.' But after that funeral, 'I became reckless,' she says. 'I thought: 'Well, life's for living. I'm just going to do what I want.' I didn't care very much for myself. I thought: 'What's the point?' I spiralled.' Her 20s and 30s passed in a blur of 'festivals, partying, travelling when I could, flying by the seat of my pants … ' She had hoped to meet someone, and to have children. 'I thought it would happen. And it never did.' In her 30s, her lung function got so low – 45%, then 36% – that she wouldn't have been able to sustain a pregnancy anyway. 'That was something I tried to grieve. But over the course of a year, I thought: 'I'd rather be alive.' My mantra became: 'I'd rather have a full and short life than a long and unhappy one.' These kinds of philosophical things got me through.' Hughes doesn't have a mantra now – 'other than trying to be funny'. The frequency of her performances range from three times a week to every few weeks, depending on her health needs. But even in her reckless phase, she embodied a stoicism, too. She worked throughout – at a call centre, a radio station, the CF Trust. 'I just had to keep going, pay my bills and mortgage.' Did she ever wonder: 'Why me?' She has had years of spitting out and swallowing mucus – 'constant, constant' – hankies everywhere, non-stop sterilising of stuff, endless medication and pain, unable to take the next breath for granted. As a child, when she went into hospital, there was a faint sense of privilege at being given Lucozade and new slippers, things her sister didn't get. But no one else in her family has the illness. Didn't she feel aggrieved? 'It's a difficult question,' she says. 'I've thought about 'Why me?' in a positive sense – that it was me because I could handle it. Or, I'm glad … because this has made me the way I am.' She has also thought, 'Why at all? Why did cystic fibrosis come into being? Why have this weird disease that just kind of ruins lives?' While Hughes survived childhood by reminding herself that she wasn't special, the differences between her life and others' sharpened as she entered her 40s. She became an aunt, and bore close witness to her peers' life transitions while she kept on being 'just Yvonne – the one that never reached any potential'. 'I couldn't have a career because I would always get ill. I never moved social class. I always remained working class.' Her dad was a welder, her mother a GP receptionist. 'Everything I did, I did myself. But it was day by day, week by week. There was never a plan. I always felt I could never get ahead of myself.' In 2018, aged 45, with deteriorating health, Hughes took redundancy from her job as public affairs officer at the CF Trust. Eating was difficult. Her weight hovered around 7 stone. She braced herself for the possibility of a lung transplant, but as her lung capacity dropped to 30%, she was deemed too ill for the waiting list. 'I was like: 'OK, that door's closed. At this point, there isn't anything else on the horizon to keep me alive.'' She completed an end-of-life form, and met the palliative care team. She thought: 'I'll see my days out with my parents, make memories and know I did well to get to 48.' Then, in 2020, the UK government granted access to a new drug, Kaftrio. Hughes had read about its worldwide trials. When the delivery driver knocked on the door, she told him: 'You're going to save my life.' At that point, her lung function was down to 26%. Within an hour or two of the first tablet, she started coughing. 'They call it the purge,' she says. There was so much mucus – dark, watery and horribly fascinating – she captured it in a cup, put a lid on it, and stowed it in a drawer in her bedroom. 'I kept that cup for a long time,' she says. Maybe she already knew it was a relic. The Kaftrio turned Hughes's life 'a whole 180, literally overnight'. There are side-effects – insomnia, weight gain, which have brought other challenges – but before long, she says, 'I could breathe again without coughing. I went back to work within the year. I could run, I could dance, I could speak, I could stand up straight and cook. I used to always be bent over, catching my breath. And then all of a sudden that was gone. It was a miracle.' Energised, she decided to enrol in an evening course. Acrylic painting, maybe, or playing the keyboard? But at the University of Strathclyde's Centre for Lifelong Learning, it was the flyer for comedy that caught her eye. 'I had always loved going to gigs. Something clicked and I enrolled.' She performed a five-minute set for the course finale – and immediately wanted to do it again. 'I started applying for clubs, Monkey Barrel and the Stand Comedy Club [both in Edinburgh]. I got Red Raw [the Stand's beginners' slot] and went from there. I want to change my life,' she says, 'and I am doing comedy to see if I can change my life.' Nearly four years ago, Hughes met her partner, Alan, online. Having spent a lifetime feeling unable 'to rely on a future', she has had to learn to picture one – and to override her old instinct to absent herself to mitigate later losses. Sometimes, this means catching herself in the act of 'pulling back' from Alan, and letting the pleasure she takes in his company teach her to quiet her mind. Life now is so different, it requires a conscious effort to remember how hard it was from one moment to the next. 'I used to breathe so shallowly that I had to take a – haa! – sharp intake of breath – to feel I was breathing,' she says. The sound punctuated even the simplest actions – after getting into a car, for instance, after reaching for her seatbelt, after pulling it across her, after fastening it. 'Now I can get in the car, pull the seatbelt over and go. I can walk and talk. I can laugh without wetting myself or going into a convulsion of coughing, pulling a muscle or breaking a rib,' she says. 'It is a horrible, horrible disease. It suffocates you. It takes every inch of your breath away. And now it is something I can live with and not die from. I'll probably live to get my pension.' Comedy has brought 'fun, joy and laughter' back into Hughes's life. But it has also given her something that nothing else has. 'I had never found anything for me in my life. I'd never married. I had no children. So I had no community. Nothing,' she says. 'There were people getting their careers and their lives sorted. Comedy was the one thing that was for me. And it still is. Just for me.' Yvonne Hughes: Absolutely Riddled is at Snug at Gilded Balloon Patter House, Edinburgh, until 15 August
The Independent
11-04-2025
- Health
- The Independent
Cystic fibrosis patient turns brush with death into Edinburgh Fringe show
A Scottish cystic fibrosis patient who wrote goodbye letters to her family before a revolutionary drug saved her life has turned her ordeal into an Edinburgh Fringe comedy show. Yvonne Hughes, 51, from Clydebank in West Dunbartonshire, has lived with cystic fibrosis (CF) – a condition which causes sticky mucus to build up in the lungs and digestive system – her whole life after her diagnosis at just six weeks old. In 2018 she was told by lung experts she would not survive a transplant after her lung capacity had fallen to 26%. She was placed on oxygen to help her breathe and began making memories with her family, believing she did not have long left to live. She also wrote letters to her family begging them to look after her parents when she was gone. However in 2020, she received a life-changing cystic fibrosis drug called Kaftrio, which transformed her life and drastically improved her health. Since then she has returned to full-time work, is in a new relationship and pursuing a career in stand-up comedy. 'Life's amazing – I've gone from barely surviving to thriving,' Ms Hughes told the PA news agency. 'You have lived your life a certain way, and all of a sudden you can take a deep breath without having a massive cough, and fit.' Before she was offered the Kaftrio drug, Ms Hughes had moved in with her parents as her health had severely declined. 'I was exhausted, I was literally bent over, I couldn't walk, I couldn't really cook anymore,' she said. 'I just didn't have the breath in me anymore to do anything, and even my speech had to slow down. 'I had also already passed the life expectancy as I was hitting into my 40s. 'At the time, the life expectancy for people with cystic fibrosis was only 33 years of age.' Within an hour of taking the drug, which came in tablet form, she started to cough up and eject all of the phlegm that had accumulated in her lungs over the years. 'I went to bed that night, and I had the best sleep I'd had since, I don't know when,' she said. 'I woke up the next day and I had no cough at all.' Since receiving the life-changing treatment, the quality of Ms Hughes' life has improved drastically. 'I can walk up a hill now, I can breathe,' she said. Ms Hughes, who believes she has been given a second chance at life, has decided to take this opportunity to pursue her dream of becoming a stand-up comedian. 'I've tried to get out and do something that I feel was always inside me, but I've never been given the chance to do. I was always too sick to do stuff,' she said. 'I took up comedy to change my life, I'm still learning. I'm going for it this year because I want to be the person that I thought I always was.' Ms Hughes will debut her show, titled Absolutely Riddled, at Gilded Balloon Patter House at the Edinburgh Fringe Festival in August. 'It's based on life before and after taking Kaftrio and how I went from barely surviving to thriving, and I'm in my 50s, when I really shouldn't be here at all,' Ms Hughes said. Her show, which features a song about mucus, makes light of some of the less savoury elements of cystic fibrosis and promises to share an unapologetic and hilarious take on her life.
Yahoo
11-04-2025
- Health
- Yahoo
Cystic fibrosis patient turns brush with death into Edinburgh Fringe show
A Scottish cystic fibrosis patient who wrote goodbye letters to her family before a revolutionary drug saved her life has turned her ordeal into an Edinburgh Fringe comedy show. Yvonne Hughes, 51, from Clydebank in West Dunbartonshire, has lived with cystic fibrosis (CF) – a condition which causes sticky mucus to build up in the lungs and digestive system – her whole life after her diagnosis at just six weeks old. In 2018 she was told by lung experts she would not survive a transplant after her lung capacity had fallen to 26%. She was placed on oxygen to help her breathe and began making memories with her family, believing she did not have long left to live. She also wrote letters to her family begging them to look after her parents when she was gone. However in 2020, she received a life-changing cystic fibrosis drug called Kaftrio, which transformed her life and drastically improved her health. Since then she has returned to full-time work, is in a new relationship and pursuing a career in stand-up comedy. 'Life's amazing – I've gone from barely surviving to thriving,' Ms Hughes told the PA news agency. 'You have lived your life a certain way, and all of a sudden you can take a deep breath without having a massive cough, and fit.' Before she was offered the Kaftrio drug, Ms Hughes had moved in with her parents as her health had severely declined. 'I was exhausted, I was literally bent over, I couldn't walk, I couldn't really cook anymore,' she said. 'I just didn't have the breath in me anymore to do anything, and even my speech had to slow down. 'I had also already passed the life expectancy as I was hitting into my 40s. 'At the time, the life expectancy for people with cystic fibrosis was only 33 years of age.' Within an hour of taking the drug, which came in tablet form, she started to cough up and eject all of the phlegm that had accumulated in her lungs over the years. 'I went to bed that night, and I had the best sleep I'd had since, I don't know when,' she said. 'I woke up the next day and I had no cough at all.' Since receiving the life-changing treatment, the quality of Ms Hughes' life has improved drastically. 'I can walk up a hill now, I can breathe,' she said. Ms Hughes, who believes she has been given a second chance at life, has decided to take this opportunity to pursue her dream of becoming a stand-up comedian. 'I've tried to get out and do something that I feel was always inside me, but I've never been given the chance to do. I was always too sick to do stuff,' she said. 'I took up comedy to change my life, I'm still learning. I'm going for it this year because I want to be the person that I thought I always was.' Ms Hughes will debut her show, titled Absolutely Riddled, at Gilded Balloon Patter House at the Edinburgh Fringe Festival in August. 'It's based on life before and after taking Kaftrio and how I went from barely surviving to thriving, and I'm in my 50s, when I really shouldn't be here at all,' Ms Hughes said. Her show, which features a song about mucus, makes light of some of the less savoury elements of cystic fibrosis and promises to share an unapologetic and hilarious take on her life. You can read more about Yvonne Hughes' show at:
