Campaigner brings global event to Frodsham for people affected by life-threatening lung disease

Posted: 19th Sep 16 10:26 AM

(We’ll be updating this post throughout the day with pictures from Sue’s fundraiser – scroll to the bottom to have a look!)

A Frodsham campaigner who tirelessly helps people with life-threatening lung diseases will hold a fundraising awareness day on Monday September 19 at the Princeway Health Centre.

Sue Stephan, coordinator of the West Cheshire Interstitial Lung Disease Group, will run a tombola, book sale and raffle at the Princeway Health Centre between 10am and 5pm.

Sue set up the West Cheshire Interstitial Lung Disease Group several years ago after her mother was diagnosed with Interstitial Pulmonary Fibrosis (IPF).

She says: “Mum got a real buzz from the group. It’s very hard to get out and meet people when you’re carrying an oxygen tank around to help you breathe. It gave us a chance to talk to other people about how you cope, oxygen safety and literally everything else. She always had a laugh with everyone at the meetings.”

Sue’s fundraiser is also part of IPF World Week, which is a global awareness initiative used to help raise awareness of IPF and other devastating lung diseases where the cause is not known. This year, it starts on Saturday September 17 and runs through to Sunday September 25.

IPF is a progressive and generally fatal disease that scars the lungs and thickens the organ’s lining to the point where the tissue is no longer able to transport oxygen and the patient can no longer breathe.

For most people, taking a deep breath is a simple task done without thinking. But for IPF sufferers, every breath is a challenge.

Sue cared for her mother for more than seven years as the lung disease gradually worsened, until her death in 2014.

Sue says: “When mum was admitted to hospital for the last time, we discussed the future of the group. I had said that I didn’t think I could carry on, but she asked me to keep the group going for her – and I have.”

If you’d like to join Sue for her fundraiser, you can visit the Princeway Health Centre, 2 Princeway, Frodsham, Cheshire, WA6 6RX, between 10am and 5pm on Monday September 19.

The West Cheshire Interstitial Lung Disease Group runs on the second Tuesday of each month at the Princeway Health Centre, from 1pm – 3pm.

(UPDATE) Photos from the day

Further reading

Sue and Sally’s story – why Carer’s Rights Day matters

What is Idiopathic Pulmonary Fibrosis (IPF)?