The pair have spoken out this September, which marks awareness month for the cruel condition
Brother and sister Lorrainne and Allan have shared that they both have been diagnosed with a terminal illness – and it’s the same condition that claimed the lives of their father and uncle. Speaking to charity, Action for Pulmonary Fibrosis, during awareness month, the family have stressed if anyone has key signs, they need to get checked out asap as the diagnosis is life-altering.
Originally from Aberdeenshire, the pair both live with pulmonary fibrosis, which also claimed the lives of their father and uncle. Pulmonary fibrosis is a condition where scar tissue builds up in the lungs – “pulmonary” refers to the lungs, and “fibrosis” means scarring.
Sadly, this scarring can make it harder for your lungs to work as they should and it makes breathing difficult. Speaking about her illness, Lorrainne said: “Receiving a terminal diagnosis changes everything.
“We have both come to terms with it, focusing on the time we have and how to make it meaningful. We are determined to make every remaining moment count.”
When Lorraine started experiencing fatigue, breathlessness and a persistent cough, she sensed something was wrong. Shortly after, Allan began showing similar symptoms.
Aware of their family history, they both went to see their doctors without delay. Sadly, they were then given the news they had suspected, and dreaded.
Common symptoms can include:
- shortness of breath (breathlessness)
- dry cough
- tiredness (fatigue)
- unexplained weight loss
- clubbing of fingers and toes (swollen and rounded finger and toe tips – see diagram four)
Risk factors for pulmonary fibrosis can include:
- Ageing
- Family history (the genes inherited from your parents)
- Breathing in something that irritates the lungs, such as smoke or dust – this will usually happen repeatedly over a long time
- Some medications
- Other conditions, such as rheumatoid arthritis
- Gastro-oesophageal reflux disease (GORD)
Lorraine was diagnosed at the age of 48, followed by her brother, Allan, at age 53. Living with pulmonary fibrosis makes even simple everyday tasks challenging, with some leaving them short of breath.
Now, they are encouraging anyone experiencing similar symptoms to seek medical advice immediately and to never ignore these important warning signs.
Coughing is another key symptom they experienced and due to it being constant, it added to their fatigue. Recalling his diagnosis, Allan said: “We’re there for each other on so many levels. We stand together through every challenge, knowing we truly understand one another’s experiences. We’re fighting this together”.
The charity, APF for short, have said that these stories are key, as very little is known about the condition. Daniel Saxton, CEO at APF said: “We are thrilled to launch our Every Breath Counts campaign for Pulmonary Fibrosis Awareness Month.
“By sharing stories like Lorraine and Allan’s, we not only raise awareness of pulmonary fibrosis but also push for urgent improvements in diagnosis, care and support. For people living with pulmonary fibrosis, time is already too short.”
Lorraine and Allan ended their awareness message on a note of hope, saying: “Our journey is one of adjustment, perseverance and support and we refuse to be passive patients. Life is for living. Keep pushing forward, find ways to stay active, and remember, you’re never alone in this fight.”
The public can join the movement at everybreathcounts.co.uk, where they can donate to support people affected by this devastating disease, help to fund vital services and research, read about the experiences of others affected by pulmonary fibrosis or share their own story if they are personally affected.
While the cause if not fully known, there are things you can do that can reduce your risk such as not smoking. Talking about the “everyday choices” that “can help you live well with pulmonary fibrosis, the charity notes that you can try the following:
- stopping smoking
- staying active
- getting support for mental health
- eating well
- keeping up to date with flu, pneumococcal and COVID-19 vaccines