Supporting people living with rare lung disease
John, one of our researchers, has developed the first UK consensus guidelines and new patient information for a rare lung disease called granulomatous-lymphocytic interstitial lung disease (GLILD).
In common lung conditions, research has led to the production of treatments that work for many people. But what happens to people living with a rarer lung condition? There’s just not enough research to guide treatment.
What is GLILD?
I look after people with a very rare lung disease called granulomatous-lymphocytic interstitial lung disease (GLILD). It only occurs if you have a problem with your immune system known as common variable immunodeficiency (CVID). About a few hundred people in the UK live with this disease.
The immune system is generally under-active in people with CVID, but in GLILD, it can become over-active and cause damage to the lungs. It’s often treated with powerful medication to suppress the immune system.
When I first started treating people with GLILD, there wasn’t much evidence to help make treatment decisions. There wasn’t even an agreed definition of the condition. There was no information available for people living with this condition. I wanted to change that.
How a BLF research grant made a difference
With the help of a British Lung Foundation grant, I led a team of researchers from University College London, Barts, Cambridge, Imperial College, Oxford and Sheffield.
We agreed an exact definition of the disease. We worked out how to test for it and looked at the different treatments being used.
People living with the condition – and their families and carers, a GP, and some hospital specialists - told us their experiences. With the help of these people, we created a leaflet for people being tested or treated for GLILD.
I am now proud to say that we have the UK’s first consensus guidelines and information for people living with GLILD. Consensus guidelines are made by experts after looking at what research is out there, so everyone can better understand an issue, procedure, or method. We’ve presented our work at international conferences. It’s an exciting start – but we need more research.
The final part of our research aims to find out why only some people get GLILD. That’s what we’re working on now. We are now looking for more funding and we’re now more likely to get it.
It all started with the grant from the BLF. Because of the grant we’ve been able to get a better understanding of GLILD. We can make sure that people with this disease get the best possible treatment, information and care. We’ve made a difference.
The new patient information on GLILD is now available on the Royal Free website. Our agreed definitions and consensus document for the disease are published in the Journal of Allergy and Clinical Immunology for health care professionals.
This research has made a difference. But more needs to be done. You can help by donating to our spring appeal. BLF research grants are funded by your generous donations. We don’t get any funding from the government.