Worthing Mayor Alex Harman joined the mum of TV personality Katie Price in visiting a group which supports an incurable but little known about lung disease.
Mr Harman attended the Worthing idiopathic pulmonary fibrosis (IPF) group on Tuesday, March 13, where people living with the condition, including Amy Price, spoke to him about the effect it has on their lives.
Amy Price, 64, from Worthing, was diagnosed IPF last year.
Since then, the Price family have come together to raise awareness of a disease many have never heard of and to tackle IPF head on.
TV star Katie has spoken openly of the devastation her mum’s diagnosis has had on her and her family and will be running the London Marathon to raise vital funds for research and support into the disease in April this year.
Katie said: “My mum means the world to me and the news of her diagnosis was a huge shock.
“I am proud to be running the London marathon to raise awareness and vital funds for the British Lung Foundation.
“One in five people in the UK are affected by lung disease and millions more are at risk.
“Running 26 miles may seem like a big challenge, but it is nothing compared to what my mum and others living with IPF and other lung conditions go through every day”.
IPF is a condition that causes progressive scarring of the lungs, making it more difficult to breathe.
There is no cure yet and there are 32,500 people living with the condition in the UK and around 6,000 new cases diagnosed a year.
Almost half of patients living with the condition will not survive for more than three years after diagnosis.
The mayor’s visit to Durrington Field Place was also to raise awareness for IPF.
Sharla Elder, respiratory nurse for Western Sussex Hospitals NHS Foundation Trust, said: “We’re incredibly grateful to the Mayor for attending our group. It will be a huge encouragement to our members.
“These groups represent an invaluable pillar of support to local people affected by IPF.
“We offer compassion and understanding, as well as advice, encouragement and friendship, all of which can really improve the health, happiness and quality of life of members.”
“One member said to us, ‘I came away from the meeting feeling really positive, and it was great to meet other people with IPF’.
“Another person said, ‘I no longer feel alone’.”
The British Lung Foundation explains that in people with IPF, scar tissue builds up in the lungs, making them thick and hard and increasingly unable to take in oxygen.
Common symptoms include persistent coughing, wheezing and breathlessness.
Alison Cook, director of policy at the British Lung Foundation said: “We hear far too often from IPF patients how they struggle to get a diagnosis, as well as access to treatment and support.
“People with IPF are being forced to spend their remaining time being shunted from service to service and fighting for treatments that could help manage their condition or even prolong their life.
“Care and treatment could be better in many parts of the UK.
“We recognise that this failure is part of the long-term neglect of lung disease as a whole.
“Current and future lung health patients need NHS England and the government to support a taskforce for lung health that will finally transform outcomes and care for these patients.”