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DART support action against lung disease
A couple of weeks ago we told you that, thanks to your orders, DART are donating to four charities that can help those in our sector who are going through hard times. This article focusses on APF, a charity that supports people with lung disease.
Between July 20th and September 11th, when you spend with us, we’ll donate up to £20 to help those hard hit by family, health and external circumstances. Last week we introduced you to the work of the Children’s Variety Charity; this week we’re going to tell you more about Action for Pulmonary Fibrosis (APF).
Which charity will you choose?
What is Pulmonary Fibrosis (PF)?
Pulmonary fibrosis is a lung disease that occurs when lung tissue becomes damaged and scarred. This thickened, stiff tissue makes it more difficult for lungs to work properly. As pulmonary fibrosis worsens, you become progressively more short of breath. Currently, there are limited treatment options for the disease. Around 70,000 people in the UK live with Pulmonary Fibrosis. It kills 5,000 people in the UK every year.
Idiopathic Pulmonary Fibrosis (IPF) is just one of more than 200 types of pulmonary fibrosis. ‘Idiopathic’ means this devastating and incurable disease arises spontaneously or has no known cause. IPF is the most common form of PF; it can affect people of all ages, but around 85% of diagnoses are made in people over 70. IPF affects more men than women, and life expectancy is around three years.
You may never have heard of pulmonary fibrosis before today; it doesn’t have a high profile and is poorly understood. It is also under-recognised and under-resourced. It’s hard to believe that in this day and age the cause is unknown and life expectancy is often worse than for lung cancer.
What does Action for Pulmonary Fibrosis (APF) do?
Action for Pulmonary Fibrosis is dedicated to working with the NHS and social care services to support people with IPF and other forms of pulmonary fibrosis, and their carers.
Many people never hear about pulmonary fibrosis unless someone they know has been affected by it. There’s a lack of:
medical understanding of the causes of the disease
research to find causes and better treatments
awareness amongst the public and policy makers
Awareness
APF work hard to raise awareness of pulmonary fibrosis amongst the general public, healthcare professionals, policy-makers and parliament. They have a strong online presence for anyone who searches for pulmonary fibrosis. Their website has a wealth of useful and practical information, and their social media pages on Facebook and Twitter reach thousands of people daily.
Research
Action for Pulmonary Fibrosis is a leading funder of research in pulmonary fibrosis. They support research activities and at the end of 2018 announced two exciting research grants. One is investigating the genetic causes of IPF; the other is looking at the impact of lung bacteria on the disease and the potential use of antibiotics. The studies are expected to lead to the development of new treatments. The research will cost a total of £580,000, funded entirely from the generous donations and money raised by supporters of APF.
Education
Each year, as part of their commitment to education, APF train hundreds of health professionals on how to diagnose patients with pulmonary fibrosis, early and accurately. They continue to expand their nurse study session programme and to reach even more health professionals, giving them access to specialists and expert information on how best to care for patients living with pulmonary fibrosis.
Support
Since the charity began in 2013, they have helped to grow the number of dedicated pulmonary fibrosis support groups from around 4 to almost 70 in the UK. These provide emotional support and education for patients and carers, and give APF unique access to patients and families so they can listen to and learn from them about what they need.
COVID-19 and pulmonary fibrosis
Action for Pulmonary Fibrosis are concerned that we could see an increase in lung scarring or fibrosis as a result of the COVID-19 pandemic.
The global pandemic is unprecedented, and this is the first time so many people have acquired an acute lung injury in the form of COVID-19. APF believe that this is due to some patients needing to be ventilated, which can result in lung damage and fibrosis.
Also, some COVID-19 patients are admitted to hospital with undiagnosed lung fibrosis, which is picked up during lung scans. This is an important finding, as COVID-19 seems to affect more men over 70 years of age — the same demographic who suffer from the idiopathic pulmonary fibrosis (IPF). Pre-existing lung fibrosis is likely to be exacerbated by COVID-19 and associated treatments.
Action for Pulmonary Fibrosis is calling for urgent research to determine how many people recovering from COVID-19 have developed fibrosis and to identify those with progressive lung fibrosis, like IPF, who will need long-term care. Charities like Action for Pulmonary Fibrosis will be needed more than ever as we plan for the ’new normal’.
If you’d like us to support the work of Action for Pulmonary Fibrosis, ask us to donate to APF when you place your next DART order and we’ll make it happen — at no extra cost to you.
Find out more about APF at https://www.actionpf.org/. Or follow them on Facebook, Twitter, or Instagram.
Gemma Cowley
