Though most people have never heard of it, there are currently around 1,300 people in Northern Ireland who have IPF, claiming 679 lives between 2008 and 20121 - more lives year-on-year than many well-known cancers including ovarian, skin cancer, and leukaemia.
IPF is a type of interstitial lung disease (ILD), which causes continuous scarring of the lungs, making it increasingly difficult for a person to breathe.
It has no known cause, no cure, and average life expectancy after diagnosis is just three to five years.
Despite this, many people living with IPF still aren’t getting the diagnosis, support or care they need.
The British Lung Foundation (BLF) has launched a new report which looks at ILD and IPF services across the UK, making key recommendations to improve the experiences for people living with this disease.
This includes developing new care pathways.
The good news is that a team of experts in Northern Ireland and across the UK has been working hard over the last six months to develop such a pathway for patients.
Irene Johnstone, Head of BLF Northern Ireland, said: “IPF is a devastating disease that affects the lives of too many here. I hope that people in Northern Ireland lend their support to this IPF Week, so that IPF services in the region, can benefit from the huge rise in awareness and research donations that has led to real progress being made in other deadly diseases.
“We’re also urging people not to ignore unusual breathlessness - its main symptom.
“If you get out of breath doing everyday things, take our online breath test to see if you might need to see a doctor.”
Dr Eoin Murtagh, consultant respiratory physician, Northern Health & Social Care Trust said:“People living with IPF experience increasing breathlessness, loss of function and loss of independence, and can be prone to acute deteriorations.
Although existing treatments can slow progression of the disease and may therefore prolong survival, they are not a cure, and may not be suitable for all patients.
“In Northern Ireland, death rates due to IPF are among the highest in the world, and we need to ensure that people living with IPF in Northern Ireland have access to review by specialist teams, access to treatments and access to support for themselves and their families in managing their symptoms.
“The development of an ILD pathway for Northern Ireland is an important first step but we need commitment, and importantly the resources, to effectively implement this plan. If we truly want to offer the best support to the people of Northern Ireland living with this devastating disease we have to Improve access to personalised treatments, diagnosis and support including anti-fibrotic drugs, ILD specialist nurses, multi-disciplinary diagnosis, oxygen therapy, pulmonary rehabilitation, peer support groups and palliative care.”