Support meeting near Kettering for pulmonary fibrosis patients and families

A charity for people with or affected by pulmonary fibrosis is holding its first support group meeting in the county.

Sunday, 20th January 2019, 6:00 am
Updated Thursday, 7th February 2019, 5:55 pm

Breathing in and breathing out is the most natural thing in the world, unless you suffer from the devastating lung disease pulmonary fibrosis.

It gradually destroys the lungs, making breathing difficult.

The UK charity Action for Pulmonary Fibrosis is holding its first support meeting in Northamptonshire for anyone with or affected by pulmonary fibrosis, which kills 5,000 people a year in the UK – more than the better-known disease leukaemia. The average life expectancy from diagnosis is between three and five years.

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This new support group launches later this month to provide support for anyone affected by pulmonary fibrosis in the Northamptonshire area.

Its first meeting will be from 1.30pm to 3.30pm on Tuesday, January 29, at The Centre, Mawsley.

This includes patients, their families, carers and friends. In other parts of the country, support groups have proved invaluable in helping patients and carers to meet each other, develop mutually supportive relationships and be informed on treatment options.

Penny Tremayne, who has spearheaded the group and lost her mother to the disease, said: “The support for people living with or affected by pulmonary fibrosis is variable - this is the first suppport group in Northamptonshire. “Supported by Action for Pulmonary Fibrosis I want to make a difference to individuals impacted by this disease.

“My own personal experience has demonstrated a lack of support for individuals and carers. I very much hope this group will offer a social and educational support system for those in need.”

John Evans of Weedon, near Daventry, was diagnosed in 2017 after suffering for months with a cough and cold. When it did not get better, and he noticed a shortness of breath, John visited his doctor who prescribed antibiotics.

Things did not improve and he was sent to Northampton General Hospital to see a consultant and he was eventually diagnosed with pulmonary fibrosis.

“That was the first time I’d ever heard of it really,” said John.

“I hadn’t a clue what it was but I’ve done a bit of research since then.”

Since May 2018 John has been under the care of Glenfield Hospital who have prescribed a new drug designed to help stop the rapid progression of the illness.

John said: “I do notice a difference from month to month. I get more breathless and I can’t lead my Nordic walking group anymore.

“If I want to go for a walk into the village I have to take ambulatory oxygen with me.

“It affects my family as well as me. It’s just not pleasant and the side effects of the drugs are not nice.

“It’s gradually shrinking the world for me.”

John said the new support group would be welcomed by many people with pulmonary fibrosis in Northamptonshire.

He said: “It’s nice to meet people who have the same problem as you.

“You can go along and have a chat and if you want to talk about the illness you can but if not, then you don’t have to.

“It’s great to go along just for the social aspect of it.

“It’s sometimes just nice to know you’re not on your own with this.”

Wendy Dickinson, daughter of Peter Taylor – one half of footballing partnership Clough & Taylor – will be speaking at the event.

Peter Taylor died of the disease and Wendy is a founding member of the charity.

Pulmonary fibrosis is a term that describes the formation of scar tissue within the lungs. It usually occurs around the small air sacs (alveoli) of the lungs.

Over time, the scar tissue builds up around the alveoli, making it harder for oxygen to pass from the lungs to the body where it is needed.

This results in feeling short of breath. At first, this may occur with more strenuous activities or walking uphill or stairs.

However, as the fibrosis increases, patients can become breathless with light activities including; washing, dressing, eating and talking.

In some people the scarring develops very quickly, while in others it happens over a longer period of time.

To attend or find out more contact Penny Tremayne on 07743 272466.