How I Was Inspired To Fight IPF

27/09/2016 13:46

IPF World Week aims to raise awareness of a little-known terminal lung condition called idiopathic pulmonary fibrosis, or IPF, which I was diagnosed with two years ago.

As a person living with IPF, I recently had the pleasure of attending an amazing event organised by Action for Pulmonary Fibrosis and Roche, which was part of a larger campaign aimed at ensuring that more information and support is available to those diagnosed with the disease, and their loved ones.

Image source: Roche

A couple of weeks ago, they arranged for a group of people with IPF, and their children and grandchildren, to all meet up in London. As well as families from across the UK, there were people from Canada and Belgium who had flown in to attend.

Image source: Roche

It was great to speak to people from other countries about the illness and meet people at all different stages of this disease, although also a harsh reminder of where I am heading.

Over the weekend, whilst the adults were all swapping notes and getting to know each other, the children were taken off to do some singing by a professional Popchoir coach.

Image source: Roche

The weekend culminated in the most emotionally touching and inspiring event. On the final day, we turned up to an unexpected performance - the children filed in to stand on stage in front of everyone, and then a surprise guest arrived...

Image source: Roche

To everyone's amazement, TV presenter Myleene Klass walked in, and then played the piano, while the children sang a moving rendition of Rachel Platten's "Fight Song".

Everyone in the room was in tears to hear the children reminding us to take back our lives, be strong, and believe we still have a lot of fight left in us against this dreadful disease that is slowly crippling us all.

It was a moving and emotional end to the weekend, and left us all determined to do our best to raise awareness of IPF and 'fight today for more tomorrows'.

The event also created many more friendships - strange, but even through this awful disease I have met some of the most wonderful people who will remain in my life forever.

Image source: Roche

Currently, around 15,000 people in the UK live with IPF (although recent reports indicate that this may be even higher), which leaves people, like me, struggling to breathe.

The reality is that, in most cases, IPF is eventually fatal due to respiratory failure, which is why campaigns like this want to raise awareness of the importance of earlier diagnosis, and to ensure those who are diagnosed have access to the information and support that they need to better manage their condition and symptoms, as well as help slow down the progression of the disease.

Image source: Roche

To watch the video, or find out more about living with IPF, visit and join the conversation on Twitter using hashtag #FightIPF.


UK Health