Living With The Terminal Lung Condition You've Never Heard Of

20/09/2016 12:10

After years of doing triathlons, I suddenly realised in 2011 that I could no longer manage the running due to severe breathiness. I knew something was wrong, but I never suspected it was something serious. After almost 10 years of doing triathlons, I thought I was fit as a fiddle.

Then after undergoing numerous tests in 2014, I was told by my consultant I have the lung condition idiopathic pulmonary fibrosis (IPF), and that the current life expectancy is three to five years. My world fell apart knowing there's no cure.

IPF has caused my lungs to scar. They've become thick and hard, making it difficult to take oxygen from the air when I breathe. I think the best way to describe it is being constantly short of breath, made even worse by just the slightest effort.

Little things like walking up stairs - just normal walking, not running - leave me completely breathless. You wouldn't know it from looking at me though. I found that family, friends and colleagues don't always appreciate the seriousness of the illness as I look so well.

Just a common cold or infection could cause my condition to get worse very quickly, or even kill me. This deterioration can occur at any point, without warning, so I have to carry standby antibiotics to prevent infections taking hold.

I'm fully aware of the route this disease will take, and there are times when this causes me bouts of stress and fear of what I may face in the future. Nobody knows what causes IPF, there's no cure, and it only gets worse and worse. Eventually, oxygen is needed 24/7 and the only hope of survival is a lung transplant, which is rare. Only 175 lung transplants were carried out in the UK in 2011-12, including people with other lung conditions.

However, these challenges haven't stopped me from raising the profile of IPF.

I've been lucky enough to talk to MPs about the effect it has on my life in the House of Parliament, on radio, and I've been helping to shape the British Lung Foundation's campaigns and research.

I even took on a triathlon challenge to show what can be achieved in the face of a seemingly devastating illness. I wanted to take on a challenge not just for myself, but to raise money to help find a cure.

I also get involved with as many research, and pharmaceutical companies as possible. I do telephone interviews and online surveys on a regular basis, which enables the experts to monitor changes in the disease. Events like the Medicine and Me IPF Conference keep me at the forefront of current developments and research information. This helps with positive thinking - knowing things are moving forward towards finding a cure.

We can make real progress in finding treatments for IPF but more people need to be aware of it to hopefully donate to research. Every tweet, share and post you make this #IPFWeek (17-25 September) helps raise awareness. You can also text 'IPF' to 70500 to donate £5 to the British Lung Foundation or donate on their website here: If you're reading this, I hope you can join the fight.


UK Health