There is a disease that affects thousands of people every year in the UK, however it is
one that many people have not even heard of.
Around 5,000 people are diagnosed with idiopathic pulmonary fibrosis every year in the UK. It is a progressive condition in which inflammation or scar tissue builds up inside the lungs, making them thick or hard and causing sufferers to have problems breathing.
Usually sufferers deteriorate quickly and as there is no known cure, more than half of the people diagnosed die within three years.
Many people and their family members across the area have been affected by the condition and some of these have teamed up to set up a group which aims to give support and to raise awareness of the condition.
Gill Southwell, from Stubbington, got involved with the Wessex Interstitial Lung Disease support group – WILD for short – when her husband Keith was diagnosed with IPF.
Keith died in December 2013 aged 78.
Gill, 68, said: ‘Although IPF is killing thousands of people every year, it is still considered to be rare.
‘We were lost in the system as there was no support as nobody seemed to know what they were talking about.
‘Everybody knows about cancer but nobody seems to know about IPF.’
Gill said she faced a struggle to get Keith diagnosed with the chronic, progressive lung disease.
‘You can’t get it diagnosed very easily as it does not show up. At first they said he had COPD, but I knew he did not,’ she said.
‘For three years I kept saying “he’s not got this” as he was not responding to inhalers. But they kept saying that he was not using them properly.
‘By the time he was diagnosed, it was too late to be able to do anything to help extend his life.’
There are two drugs available that, if patients are diagnosed early enough, can help to extend IPF sufferers’ lives.
Gill was introduced to WILD by Southampton Hospital Charity and is now keen to raise awareness, particularly with GPs so that they can recognise the symptoms earlier.
She said: ‘When Keith died I thought I had had enough of it. But I realised that now I don’t have anyone to look after I could put my effort into helping others.’
The group held an awareness day in Fareham Shopping Centre last month.
Alongside Gill on the day was Chris Brown, 63, and his wife Georgina, 54.
Chris, from Gosport, was diagnosed with IPF in 2011.
He was diagnosed earlier than most, although doctors believed Chris had a chest infection for six months, but when he got a second opinion, he was diagnosed with IPF.
Chris said: ‘I retired early because it affects you that badly. You have trouble accepting the fact that it is incurable. It takes an awful lot of getting used to that and then there’s no support out there.
‘Last year there was the first meeting of WILD, we went because we had no-one else to talk to about it.
‘We have taken an active part in the group because we found it so useful.’
Chris has been taking recordings of the sounds of his lungs – which make a velcro-ripping noise – and passing them to GPs so they can learn how to listen for the disease.
And it’s not just sufferers and GPs that have benefited from the group.
Chris’ wife Georgina said: ‘It has helped a lot because when you talk about it with family and friends they don’t understand what it is.
‘For me it was nice to be able to talk about things with other people going through the same thing.
‘We were able to get advice on how to travel with the disease and the oxygen supply so we were able to do all the things we wanted to do.
‘Through raising awareness, our friends and family have been able to go online and find out more. And the response has been amazing.
‘Everyone says that Chris looks really well, but he is not. It is a disease at the end of the day and it is awful.’
Also helping at the awareness day was another member of the WILD support group.
June Butler, 70, is from Southampton.
June’s husband David, 74, was diagnosed with IPF in May last year. He is very ill with the disease and has to be on oxygen.
She said: ‘The clinicians put me in touch with the group and we went to the first meeting.
‘The support we have got is fantastic. We met other people and they told us how to deal with the problems.
‘We got a lot of information out of our meetings, all sorts of things that you wouldn’t know how to cope without.’
The group held its first meeting in Eastleigh in September 2014, which was attended by 60 patients and their carers.
Plans are in place to hold a Christmas get together and to hold its next meeting in January.
Gill said: ‘I am hoping that through this things will change.
‘We ended up on our own and it was a nightmare. We were worn down and needed some help. Hopefully this will help others.’
For more information go to wildsupport.co.uk/ or call (023) 8120 8881.