IPF World Week

Today marks the first day of Worldwide IPF Week, where charities, organisations, healthcare professionals, patients and loved ones all come together to raise awareness of Idiopathic Pulmonary Fibrosis. Whilst those who have been reading my blog for some time may already be aware of this devastating disease, it doesn’t hurt to remind you of some of the facts and figures that correlate to IPF.

There are approximately 32,500 people in the UK estimated to be diagnosed with IPF, although this figure is disputed to be much higher as the many can be misdiagnosed for a lengthy period of time. It affects the average 70 year old male, but at present there are many much younger showing worrying symptoms or having been diagnosed themselves. In the United States, IPF is estimated to be as prevalent as breast cancer whilst it is as prevalent as leukemia here in the UK, yet I bet most of you haven’t heard of it…

My Father was diagnosed with IPF in late 2015 aged 59 and unfortunately passed away in June 2017 aged 61. In this short period of time he lost a huge percentage of lung capacity meaning he had to come to terms using oxygen therapy and was denied the possibility of a lung transplant due to having previously had heart surgery to correct an aortic valve. He was treated with some medicines, but due to the lack of awareness and knowledge even among healthcare professionals, this was to no avail and he deteriorated relatively quickly. The statistics will tell you that some will die within three years of diagnosis whereas some live much longer should they be given the right effective treatment to stall the onset of fibrosis.

But what is it? In lamens term it is a disease of unknown cause that creates scarring in the lung tissue. This restricts the capacity and therefore makes it difficult for the patient to breathe and eventually they must rely on oxygen to assist in their day to day life. The damage to the lungs is irreversible with no cure, only some medication can stall the onset of scar tissue, but this varies from person to person. Most patients succumb to the increase of liklihood of contracting chest infections and pneumonia.

At present, IPF has many disadvantages not solely related to the disease itself. There is a distinct lack of awareness and knowledge meaning depending on where you live, there are dramatic differences in the types of support and treatment you will receive. Some will become housebound due to the increase in intake of oxygen they require to stay mobile whilst some will rely on loved ones to become their full time carers to assist with their daily needs.

Charities including the British Lung Foundation and Action for Pulmonary Fibrosis are desperately trying to increase the attention given to lung diseases including IPF, but by choosing one week in September, the world is coming together to help increase awareness of this horrific and debilitating disease. In the near future I hope to do more of my own fundraising plus continue my research into the Psychological Impact of IPF and other Interstitial Lung Diseases. So watch this space!

You can follow the hashtags; #IPFWeek #IPFWorldWeek and #UNITE4IPF on social media to see all the events taking place. You can also find out more about IPF, Pulmonary Fibrosis and other lung diseases through the British Lung Foundation and Action for Pulmonary Fibrosis.

 

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