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.

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