Pulmonary Fibrosis Awareness Month
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As many of you know, September is Pulmonary Fibrosis (PF) Awareness Month. This global initiative aims to raise awareness of pulmonary fibrosis, its impact and the need for more research and support. PF Awareness month aims to amplify patient voices, encourage early diagnosis, and fund research to find a cure.
This September, I want to shout out to all the amazing charities and patient organisations that work so hard on behalf of those affected by pulmonary fibrosis. I’m keen to recognise and applaud what they are doing, whilst highlighting to our members what they can offer our patients.
Action for Pulmonary Fibrosis (APF) https://www.actionpf.org/ is a patient-led charity that offers advocacy, information, education and support. Alongside offering high quality, engaging health information, APF facilitates a network of face-to-face and online support groups for both patients and carers, a volunteer telephone befriending service and a nurse-led support line. APF also offer resources for health care professionals, including service development tool kits and research funding opportunities.
The Pulmonary Fibrosis Trust https://pulmonaryfibrosistrust.org/ aims to offer practical support, including funding for additional batteries for portable oxygen concentrators, wheelchairs, mobility scooters and stairlifts.
The Irish Lung Fibrosis Association (ILFA) https://ilfa.ie/ is a friendly, patient-centred organisation with an information-packed YouTube channel.
Further afield, the US-based group, PF Warriors https://pfwarriors.com/, is an international organisation which is free to join and offers innovative programmes such as online, home-based pulmonary rehab and Qigong for pulmonary health.
Asthma and Lung UK https://www.asthmaandlung.org.uk/ have a broad remit which includes Interstitial Lung Disease (ILD). Their website is full of useful information on topics such as symptom management, their support line is open to anyone affected by respiratory disease and they also offer access to ’Singing for Lung Health’ sessions. Also, don’t forget the organisations which offer support for the issues which often come hand-in-hand with ILD, like Versus Arthritis https://versusarthritis.org/, Sarcoidosis UK https://www.sarcoidosisuk.org/ and Scleroderma and Raynaud's UK https://www.sruk.co.uk/
An ILD diagnosis is challenging for patients and their family. Signposting people towards the very best information and support, in a personalised and timely way, is a crucial part of our role as respiratory nurses and allied health professionals. During Pulmonary Fibrosis Awareness Month, I want to acknowledge and appreciate the staff and volunteers of all these organisations, who are helping to make the ILD journey less isolating and confusing for our patients.
- Jessica Mandizha, ARNS Interstitial Lung Disease (ILD) Lead