Latest news with #pulmonaryfibrosis
Daily Mail
2 days ago
- Health
- Daily Mail
EXCLUSIVE I discovered I was expecting after doctors gave me a terminal diagnosis - mother shares 'miracle' pregnancy journey on new Mail podcast
Podcast All episodes Play on Apple Spotify A young mother has shared the extraordinary story of her 'miracle' pregnancy while facing a terminal diagnosis, in the latest episode of the Mail's The Apple & The Tree podcast. Fiona Hinton, 42, spoke to her father, Steven Speakman, 71, about the challenges of balancing motherhood with advanced pulmonary fibrosis. The podcast, hosted by the Reverend Richard Coles, brings together parents and their adult children to answer questions about their shared family history. Pulmonary fibrosis is a progressive lung disease where scar tissue builds up in the lungs, making it increasingly difficult to breathe and ultimately proving fatal as the lungs lose their ability to transfer oxygen to the blood. 'I was 35 and I had a cold that just rambled on and on', Fiona said. 'Doctors told me I had asthma, but it didn't feel like asthma. Nothing would relieve this cough – I tried inhalers and various other things. 'I was a client director, so I would go to London a lot to present at conferences. It got to this point where I would get breathless going up on stage. 'I would never say I was the pinnacle of athletic health – but this seemed very odd, the breathlessness kept getting worse and worse.' Fiona revealed her symptoms reached a crisis point during a business meeting when she couldn't catch her breath after climbing just one flight of stairs. 'The CEO turned to me and said: "Fiona, you look really uncomfortable", she recounted. 'I could barely breathe in this meeting - he told me to go home and go to A&E. 'My dad took me to the hospital, and we had to petition for the nurses to take me seriously. I remember saying: 'I can't go home, I can't breathe, I can't wait and see – I think I'm dying.' After being transferred to a specialist treatment centre, doctors told Fiona she had pulmonary fibrosis, an 'extremely rare' diagnosis for her age. Steven, a former teacher from Manchester, told the podcast that he has struggled to accept the devastating news. He said: 'It's this slow and ratcheting thing to conclude that your daughter's life is going to be limited. 'I still hold out hope for a cure because it's been difficult for me. I think of myself as physically robust and you're my junior; I struggled to accept it. 'I have come to terms with it now: we're all limited in life – there is a beginning and an end and there's a brevity to your life that's hard upon us to accept.' While coming to terms with her terminal diagnosis, Fiona 'miraculously' fell pregnant despite having previously struggled to conceive. 'Something that lifted the mood for us all was the arrival of Harry', she said. 'I have a two-year-old and he came about quite miraculously after the diagnosis. My husband and I had IVF for several years and had no success. We decided to give up. 'By some miracle, we fell naturally pregnant – my son arrived in 2022, and he's been the light of lives, raising everybody's spirits.' Fiona broke down when candidly discussing the challenges of new motherhood while facing her own mortality. She said: 'I have to plan ahead all of the time now - that is tedious sometimes. I am a strong person, but it's difficult being put in that vulnerable position all the time. 'Disease doesn't discriminate – it gets you wherever you are and whoever you are. 'It's not guaranteed I will grow old with my husband or see my son grow up – and that's hard. Sometimes, it's too awful to contemplate. 'All I see is Harry's little face and that's a dagger to heart. Nobody loves you like your mum loves you. 'I just have to think one day at a time because the alternative is total and utter despair. 'I want to play a role in Harry's life – to let him know who I was, because I won't necessarily be there to do that forever.' To listen to full episode, search for The Apple & The Tree, wherever you get your podcasts. New episodes are released every Thursday.
Yahoo
24-05-2025
- Health
- Yahoo
Siblings battling lung disease raise awareness
A brother and sister with a rare lung disease which leaves them struggling for breath are raising awareness of the condition. Joanne Lovejoy-Waud and Mark Waud were diagnosed with pulmonary fibrosis (PF) at the ages of 52 and 59, respectively. Their father Bernard Waud died from the condition when he was 50 years old. Mrs Lovejoy-Waud, from Goole, said more than 30 years after her father's death there was still no cure for the disease. The Pulmonary Fibrosis Trust said the "rare" disease has an average life expectancy of between three-to five years after diagnosis and in the majority of cases, the cause was unknown. Mark Waud was diagnosed with idiopathic pulmonary fibrosis (IPF) in April 2024 and said he had 12 months to live. His constant companion is a black bag containing a canister filled with life-saving oxygen. During the interview, the 60-year-old from Wakefield paused often to cough and sip water to lubricate his throat. Physical movement, like climbing the stairs, can trigger a "coughing fit to a stage where I'd literally induce a panic attack because you literally can't breath. It feels like somebody's sat on your chest," he said. On receiving his diagnosis, he said: "It wasn't too much of a shock, because my sister had been diagnosed two years earlier." His sister Joanne Lovejoy-Waud sought medical advice after coughing up blood. On receiving the diagnosis she said "as we (Nicola Lovejoy-Ward) were driving home, we felt numb". Like her brother, Joanne Loveday-Waud is dependant on oxygen. "I can't remember breathing normally without it. It's a way of life," she said. A tube attached to her nostrils fills her lungs with liquid oxygen. "I can feel the cold oxygen passing through my nose. It (the tubes) makes my nose and behind my ears sore. It's uncomfortable at first, but you get used to it." The 55-year-old was active, but the progressive disease dictates how she will live the remainder of her life. "I can't walk more than 10m (32ft) without oxygen." "The worst thing about this disease is the anxiety when people are looking at you and staring while you've got your oxygen on," she added. Nicola Lovejoy-Waud and her wife are organising an annual event called Picnic in the Park in West Park, Goole on 1 June to help raise awareness of IPF. "We know that not many people have heard of pulmonary fibrosis, not a lot of people know what the Pulmonary Fibrosis Trust do. So, we raise awareness to promote and gain funding." Peter Bryce chair of Pulmonary Fibrosis Trust said more than 6,000 people die from PF each year in the UK. The symptoms include shortness of breath, fatigue and a persistent dry cough. "I do not know why there is so little awareness of this dreadful condition. "The number of people living with PF is considerably less than some lung conditions, but as the prognosis is so poor, it should have wider concern," he added. There are thought to be 200 different causes of PF, including genetic. The siblings have a form of PF known as idiopathy - which means cause unknown. Joanne Lovejoy-Waud is being assessed for a lung transplant and was aware of the long transplant waiting list. Meanwhile, Mr Waud, who has liquid morphine for pain control, said because of the risks involved with a transplant he was "undecided". For Joanne's wife Nicola, the emotional trauma of having two relatives with a life limiting condition is hard to bear. She said: "It's like a black cloud hanging over us because you don't know when that time is going to come. "Ultimately, I'll have two funerals to attend. One being my wife and one being my brother-in-law," she added. Listen to highlights from Hull and East Yorkshire on BBC Sounds, watch the latest episode of Look North or tell us about a story you think we should be covering here. Lung transplant recipient thanks 'true hero' donor Funding plea for rare lung disease Coronavirus could leave thousands with lung damage Pulmonary Fibrosis Trust British Lung Foundation
BBC News
24-05-2025
- Health
- BBC News
Pulmonary fibrosis: Lung disease siblings battling to breathe
A brother and sister with a rare lung disease which leaves them struggling for breath are raising awareness of the Lovejoy-Waud and Mark Waud were diagnosed with pulmonary fibrosis (PF) at the ages of 52 and 59, respectively. Their father Bernard Waud died from the condition when he was 50 years old. Mrs Lovejoy-Waud, from Goole, said more than 30 years after her father's death there was still no cure for the disease. The Pulmonary Fibrosis Trust said the "rare" disease has an average life expectancy of between three-to five years after diagnosis and in the majority of cases, the cause was unknown. 'Can't breathe' Mark Waud was diagnosed with idiopathic pulmonary fibrosis (IPF) in April 2024 and said he had 12 months to constant companion is a black bag containing a canister filled with life-saving the interview, the 60-year-old from Wakefield paused often to cough and sip water to lubricate his movement, like climbing the stairs, can trigger a "coughing fit to a stage where I'd literally induce a panic attack because you literally can't breath. It feels like somebody's sat on your chest," he receiving his diagnosis, he said: "It wasn't too much of a shock, because my sister had been diagnosed two years earlier." Coughing up blood His sister Joanne Lovejoy-Waud sought medical advice after coughing up blood. On receiving the diagnosis she said "as we (Nicola Lovejoy-Ward) were driving home, we felt numb". Like her brother, Joanne Loveday-Waud is dependant on oxygen. "I can't remember breathing normally without it. It's a way of life," she said.A tube attached to her nostrils fills her lungs with liquid oxygen. "I can feel the cold oxygen passing through my nose. It (the tubes) makes my nose and behind my ears sore. It's uncomfortable at first, but you get used to it."The 55-year-old was active, but the progressive disease dictates how she will live the remainder of her life. "I can't walk more than 10m (32ft) without oxygen.""The worst thing about this disease is the anxiety when people are looking at you and staring while you've got your oxygen on," she added. Nicola Lovejoy-Waud and her wife are organising an annual event called Picnic in the Park in West Park, Goole on 1 June to help raise awareness of IPF."We know that not many people have heard of pulmonary fibrosis, not a lot of people know what the Pulmonary Fibrosis Trust do. So, we raise awareness to promote and gain funding."Peter Bryce chair of Pulmonary Fibrosis Trust said more than 6,000 people die from PF each year in the UK. The symptoms include shortness of breath, fatigue and a persistent dry cough."I do not know why there is so little awareness of this dreadful condition. "The number of people living with PF is considerably less than some lung conditions, but as the prognosis is so poor, it should have wider concern," he added. 'Black cloud' There are thought to be 200 different causes of PF, including siblings have a form of PF known as idiopathy - which means cause Lovejoy-Waud is being assessed for a lung transplant and was aware of the long transplant waiting Mr Waud, who has liquid morphine for pain control, said because of the risks involved with a transplant he was "undecided".For Joanne's wife Nicola, the emotional trauma of having two relatives with a life limiting condition is hard to said: "It's like a black cloud hanging over us because you don't know when that time is going to come."Ultimately, I'll have two funerals to attend. One being my wife and one being my brother-in-law," she added. Listen to highlights from Hull and East Yorkshire on BBC Sounds, watch the latest episode of Look North or tell us about a story you think we should be covering here.
Yahoo
24-05-2025
- Health
- Yahoo
Siblings battling lung disease raise awareness
A brother and sister with a rare lung disease which leaves them struggling for breath are raising awareness of the condition. Joanne Lovejoy-Waud and Mark Waud were diagnosed with pulmonary fibrosis (PF) at the ages of 52 and 59, respectively. Their father Bernard Waud died from the condition when he was 50 years old. Mrs Lovejoy-Waud, from Goole, said more than 30 years after her father's death there was still no cure for the disease. The Pulmonary Fibrosis Trust said the "rare" disease has an average life expectancy of between three-to five years after diagnosis and in the majority of cases, the cause was unknown. Mark Waud was diagnosed with idiopathic pulmonary fibrosis (IPF) in April 2024 and said he had 12 months to live. His constant companion is a black bag containing a canister filled with life-saving oxygen. During the interview, the 60-year-old from Wakefield paused often to cough and sip water to lubricate his throat. Physical movement, like climbing the stairs, can trigger a "coughing fit to a stage where I'd literally induce a panic attack because you literally can't breath. It feels like somebody's sat on your chest," he said. On receiving his diagnosis, he said: "It wasn't too much of a shock, because my sister had been diagnosed two years earlier." His sister Joanne Lovejoy-Waud sought medical advice after coughing up blood. On receiving the diagnosis she said "as we (Nicola Lovejoy-Ward) were driving home, we felt numb". Like her brother, Joanne Loveday-Waud is dependant on oxygen. "I can't remember breathing normally without it. It's a way of life," she said. A tube attached to her nostrils fills her lungs with liquid oxygen. "I can feel the cold oxygen passing through my nose. It (the tubes) makes my nose and behind my ears sore. It's uncomfortable at first, but you get used to it." The 55-year-old was active, but the progressive disease dictates how she will live the remainder of her life. "I can't walk more than 10m (32ft) without oxygen." "The worst thing about this disease is the anxiety when people are looking at you and staring while you've got your oxygen on," she added. Nicola Lovejoy-Waud and her wife are organising an annual event called Picnic in the Park in West Park, Goole on 1 June to help raise awareness of IPF. "We know that not many people have heard of pulmonary fibrosis, not a lot of people know what the Pulmonary Fibrosis Trust do. So, we raise awareness to promote and gain funding." Peter Bryce chair of Pulmonary Fibrosis Trust said more than 6,000 people die from PF each year in the UK. The symptoms include shortness of breath, fatigue and a persistent dry cough. "I do not know why there is so little awareness of this dreadful condition. "The number of people living with PF is considerably less than some lung conditions, but as the prognosis is so poor, it should have wider concern," he added. There are thought to be 200 different causes of PF, including genetic. The siblings have a form of PF known as idiopathy - which means cause unknown. Joanne Lovejoy-Waud is being assessed for a lung transplant and was aware of the long transplant waiting list. Meanwhile, Mr Waud, who has liquid morphine for pain control, said because of the risks involved with a transplant he was "undecided". For Joanne's wife Nicola, the emotional trauma of having two relatives with a life limiting condition is hard to bear. She said: "It's like a black cloud hanging over us because you don't know when that time is going to come. "Ultimately, I'll have two funerals to attend. One being my wife and one being my brother-in-law," she added. Listen to highlights from Hull and East Yorkshire on BBC Sounds, watch the latest episode of Look North or tell us about a story you think we should be covering here. Lung transplant recipient thanks 'true hero' donor Funding plea for rare lung disease Coronavirus could leave thousands with lung damage Pulmonary Fibrosis Trust British Lung Foundation
Medscape
20-05-2025
- Health
- Medscape
Less FVC Decline in Progressive PF With Oral Nerandomilast
SAN FRANCISCO — The investigational oral agent nerandomilast was superior to placebo at slowing the decline in forced vital capacity (FVC) among patients with progressive pulmonary fibrosis (PF), results of the phase 3 randomized FIBRONEER-ILD trial showed. Among 1176 patients, the mean decline from baseline in FVC at 1 year was significantly greater for those assigned to receive a placebo than those assigned to receive nerandomilast at either of two doses, reported Marlies S. Wijsenbeek, MD, PhD, from Erasmus Medical Center in Rotterdam, the Netherlands. 'I think, personally, that these results are really a major step forward. After a decade of failed phase 3, we have now a positive trial which is really important for treatment of people with IPF [idiopathic PF],' she said in oral abstract session at American Thoracic Society (ATS) 2025 International Conference. The study was also published online in The New England Journal of Medicine to coincide with the presentation. Phosphodiesterase 4B (PDE-4B) Inhibitor Nerandomilast is an oral preferential inhibitor of PDE-4B that has shown both antifibrotic and immunomodulatory effects in preclinical models. In a phase 3 follow-on trial of this agent in patients with IPF (FIBRONEER-IPF), nerandomilast was associated with a smaller decline in FVC compared with placebo over 1 year. In FIBRONEER-ILD, which was conducted at 403 sites in 44 countries, patients with fibrosing interstitial lung disease (ILD) other than IPF were enrolled. After stratification by prior nintedanib (OFEV) use and high-resolution CT pattern (either usual interstitial pneumonia [UIP] or UIP-like fibrotic pattern vs other fibrotic patterns), patients were randomized in a 1:1:1 ratio to receive either nerandomilast twice daily at doses of 18 or 9 mg or placebo. Approximately 44% of patients in each study arm were on nintedanib background therapy. The adjusted mean change in FVC at week 52, the primary endpoint, was −98.6 mL for patients assigned to nerandomilast 18 mg, −84.6 mL for those assigned to nerandomilast 9 mg, and −165.8 mL for those assigned to placebo. The adjusted difference between 9-mg nerandomilast and placebo groups was 81.1 mL ( P < .001), and the adjusted difference between 18-mg and placebo groups was 67.2 mL ( P < .001). The effect of nerandomilast was generally consistent across ILD subtypes, Wijsenbeek said. At the time of data cutoff, a first acute exacerbation of ILD, hospitalization for a respiratory cause, or death — a key composite secondary endpoint — occurred in 95 patients on the 18-mg dose, 110 on the 9-mg dose, and 122 patients on placebo. These differences did not reach statistical significance, however. A total of 24 patients in the 18-mg group (6.1%), 33 in the 9-mg group (8.4%), and 50 in the placebo group (12.8%) died during the study. The hazard ratio for death among patients in the 18-mg vs placebo group was 0.48 (95% CI, 0.30-0.79), and the hazard ratio for the 9-mg vs placebo group was 0.60 (95% CI, 0.38-0.95). Diarrhea, the most common adverse event, was reported in 36.6% of patients taking 18 mg nerandomilast twice daily, 29.5% of those taking 9 mg twice daily, and 24.7% of those on placebo. Diarrhea leading to discontinuation was also higher in both the nerandomilast dosing groups than in the placebo group. In the question and answer following her talk, Gisli Jenkins, MD, PhD, from Imperial College London, London, England, asked Wijsenbeek whether slowing absolute decline in FVC was the best endpoint for the trial. 'I think there is a lot of debate [about] what is the best endpoint. I think it's the best endpoint we currently have,' she replied. Ganesh Raghu, MD, from the University of Washington in Seattle, commented that FIBRONEER-ILD efficacy data were similar to those seen a decade ago with nintedanib and asked Wijsenbeek whether she could put the new data in context with existing therapies. She replied that although the efficacy of the agents are similar, patients appear to tolerate nerandomilast better than nintedanib, 'so that's a gain, in my opinion.' She added that any additional clinical benefit, even if it's only incremental, is better for patients, and she noted that although the study was not powered to detect a decrease in acute exacerbations, hospitalizations, or deaths, the data pointed to a benefit for nerandomilast. In an editorial accompanying the study in NEJM , Joyce S. Lee, MD, from the University of Colorado Anschutz Medical Campus in Aurora, Colorado, commented that the FIBRONEER-IPF and FIBRONEER-ILD trials 'represent a meaningful advancement in the treatment landscape for persons living with IPF and progressive ILD other than IPF. Important issues that our community of clinicians will need to address moving forward nonetheless remain — decisions regarding the choice of first-line therapy, indications for up-front combination therapy as compared with add-on therapy, and the role of immunosuppression in patients with non-IPF ILD and a PPF phenotype.' The study was supported by Boehringer Ingelheim. Wijsenbeek reported serving on a scientific advisory board and receiving speaker fees and unrestricted grants, all paid to her institution and not her personally. Lee and Jenkins reported having financial relationships with Boehringer Ingelheim and others. Raghu disclosed advisory board/consulting activities for various companies, not including Boehringer Ingelheim.
