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 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.
'Can't breathe'
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."
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 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.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
The Guardian
22 minutes ago
- The Guardian
All babies in England to get DNA test to assess risk of diseases within 10 years
Every baby in England is to have a DNA screening to avoid fatal diseases and receive personalised healthcare as part of the government's £650m investment in DNA technology, it has been reported. Within a decade, every newborn will undergo whole genome sequencing, which assesses the risk of hundreds of diseases and is expected to form part of the government's 10-year plan for the health service. Wes Streeting, the health secretary, told the Telegraph the advances in genomics would allow people to 'leapfrog' killer illnesses and receive 'personalised' health care. He said: 'The revolution in medical science means that we can transform the NHS over the coming decade, from a service which diagnoses and treats ill health to one that predicts and prevents it. 'Genomics presents us with the opportunity to leapfrog disease, so we're in front of it rather than reacting to it.' Streeting added: 'With the power of this new technology, patients will be able to receive personalised healthcare to prevent ill health before symptoms begin, reducing the pressure on NHS services and helping people live longer, healthier lives.' All new parents are now offered a blood spot test for their babies, normally when the child is five days old, to check whether they have any of nine rare but serious conditions. The newborn's heel is pricked to collect a few drops of blood on a card that is sent away to be tested. Along with a greater focus on prevention, the 10-year plan is expected to include Streeting's other 'shifts' in the NHS, from hospitals towards more community-focused care and from analogue to digital services. Last week the chancellor, Rachel Reeves, announced that the government would increase NHS funding by £29bn a year in real terms over the next three years. A Department of Health and Social Care spokesperson said: 'Our 10-year health plan will be published soon and will set out details for a range of initiatives to advance the NHS and make it fit for the future.' In October, the NHS in England announced it was to screen 100,000 newborn babies for more than 200 genetic conditions in a world-first scheme aimed at bolstering early diagnosis and treatment.
The Independent
an hour ago
- The Independent
Every baby's DNA ‘to be screened' on the NHS in bid to detect and prevent disease
All babies could have their DNA mapped to test for future illnesses under a plan unveiled by the government, it has been reported. Labour is set to pour £650 million into DNA technology in an effort to treat serious illnesses before they become a problem. In comments first reported in the Daily Telegraph, health secretary Wes Streeting said new technology in areas such as genomics would help 'leapfrog' illnesses. The outlet says, within a decade, every baby will undergo whole genome sequencing as part of the drive. The investment in genomics is expected to support the Government's 10-year plan for the NHS, which will see a greater focus on technology and prevention. Mr Streeting said: 'The revolution in medical science means that we can transform the NHS over the coming decade, from a service which diagnoses and treats ill health to one that predicts and prevents it. 'Genomics presents us with the opportunity to leapfrog disease, so we're in front of it rather than reacting to it.' Mr Streeting has previously spoken about his desire to make the NHS more preventative, reducing rates of serious illness and saving money in the process. The plan is also likely to see a greater role for artificial intelligence and other technologies to predict illness and allow treatment or medication to be offered much earlier. He added: 'With the power of this new technology, patients will be able to receive personalised healthcare to prevent ill health before symptoms begin, reducing the pressure on NHS services and helping people live longer, healthier lives.' Along with a greater focus on prevention, the Government's 10-year plan is expected to include Mr Streeting's two other 'shifts' in the NHS. That will see a shift away from hospitals towards more community-focused care, and from analogue to digital services. It follows Chancellor Rachel Reeves' announcement that the Government would increase NHS funding by £29 billion per year in real terms over the next three years as it tries to cut waiting lists in line with its election promises.
Sky News
an hour ago
- Sky News
The assisted dying debate has been politics – but not as we know it
The House of Commons is a place defined by confrontation where political battles play out and engage more actively with their constituents. But the atmosphere could not have been more different on Friday, as those on both sides of the assisted dying debate listened respectfully, almost solemnly, to one another in the final hours before the crucial vote. As MPs headed for the division lobbies, the bill's supporters seemed confident but nervous. When the voting was completed and the result imminent, a long and profound silence fell over the House. From the press gallery, it seemed that the entire Commons was holding its breath together, collectively aware of the historic moment we were all about to witness, whatever the outcome. The woman at the centre of this seismic moment, the bill's sponsor Kim Leadbeater, braced herself as the result came in. Many months of pressure and responsibility appeared to be lifted from her shoulders as the win was announced and colleagues gathered to commend her efforts. Throughout the process this been politics but not as we know it, with party divisions put aside and MPs asked to search their own consciences and come to their own conclusions. It has created a more collaborative atmosphere in parliament and encouraged MPs to engage more actively with their constituents. 3:06 In the end there was still anger, frustration and disappointment among those who were against the law change, either on principle or because they believed the legislation was flawed. And of course, politics will go back to being combative and voices in the Commons will be raised once again. But for a brief period, historic change was calmly ushered in. The challenge for the proponents now is to take the legislation through the next phases and deliver it with the same smoothness and determination.
