Felixstowe woman raising awareness for life-limiting lung condition says she's 'not beaten yet'
Lesley Berry was diagnosed with Idiopathic Pulmonary Fibrosis four years ago
A woman from Suffolk is raising awareness of a life-limiting lung disease - Idiopathic Pulmonary Fibrosis (IPF).
The NHS website defines the condition as when 'the lungs become scarred and breathing becomes more difficult'.
Lesley Berry, who was diagnosed with the condition in June 2020 describes it as a 'progressive life limiting disease of the lungs... you're unable to get oxygen through the lungs into the bloodstream'.
She told us it 'robs you of your breath', that your lungs become stiff and it makes you very tired, making it difficult to do every day things.
Lesley had experienced a persistent cough and breathlessness for around 18 months , when her son, who works in the medical profession, prompted her to get it checked out.
She then had lung function tests, X-rays and a CT scan by Ipswich and Papworth Hospitals, which clarified that it was IPF.
She is now sharing her story to help others know the symptoms and visit their GP if they have any concerns.
Lesley told us that until her diagnosis she didn't know what IPF was and had never heard of it before.
Lesley's story
Lesley shared her journey with us.
"During the first 4 years it didn't progress very much, my statistics would come back reasonably okay and then it took quiet a dip.
"...It was at that point where I really realised I am not going to beat this.
"When I was told it (the diagnosis) I thought 'no, no this is a disease that's not going to get me. It might be life limiting, but not with me'.
"So I was in a bit of denial and lived like that. I've always lived a very positive outlook on life but this time I do know that over the last 6 months it had declined considerably.
"...You do need aid, I can't shower without sitting down, I find doing my hair really hard, just normal everyday things take extra effort as though you're climbing a mountain every day."
She told us how she views the disease: "I liken it to there being a little gremlin in there, slowly chewing away my lungs and at the moment, it's having a good old go."
She told us there is no cure for the condition, but she has tried various treatments to help slow down it's progress and manage it:
"The antifibrotic drugs worked quiet well for a while and then I couldn't tolerate them, they have all sorts of side effects.
"I am on no other medication, other than steriods, which in turn, have their own effects on your body.
"Through that I have now developed weaker bones and compression fractures in my spine, which are so painful especially when you can't breath at the same time."
Raising Awareness
Since her diagnosis Lesley has joined the support group Action for Pulmonary fibrosis and even created her own branch for people in Ipswich, which meets once a month for conversation and coffee.
"Awareness is what I am so insistent on spreading now, because the people I've met have made my life more positive... We all come different walks of life and we've all been so supportive of eachother."
Lesely also wants to raise money for more research into the condition:
"My aim is to get this out to as many people as possible so they don't get afraid, work with it and maybe if we all work together they will put more research into it and come up with a cure."
"...Probably not in my lifetime... but it would be wonderful to know that in a future lifetime, this was something you get it 'oh I've got it, I'll take a pill' and it's gone again."
Lesley's daughter set up a funding page just under a month ago on which shared her story and in a short space of time it's already raised over £6.5k and she plans to carry on.
"I can't tell you how important it is to me to spead awareness it because I dont want this to happen to other people if it can be avoided.
"...The quicker that it's diagnoses, the better for the person. I mean if you're under 50 theres a really good chance of getting a lung transplant if there's one available.
"I do believe a person getting this under 50, who may have a family, may have to go to work, it must be so hard for them."
Despite her diagnosis Lesley is looking at all the positives in her life:
"It's giving me time to get rid of my jewellery to my children, giving me time to tell them how much I love them and if you get taken by a heart attack that's really hard for the people left behind. I've got time to sort it all out and make sure they're all ok because that's the worst thing is leaving them all behind.
"...I do find I get a little emotional if I go into the situation whereby I want to stand on the side-line and watch my grandchildren. I use to do all of these thing but if you can take the positive out of everything, then why not, why feel depressed about it because that doesn't help anybody."
You can read more on the condition on the Action for Pulmonary Fibrosis website.
If you are affected by pulmonary fibrosis, the charity also has a support service is for people living with pulmonary fibrosis, carers, family members and health and social care professionals - 01223 785 725.