12 August 2026
Support group for people diagnosed with rare lung disease
Do you know what interstitial lung disease is? If not, you’re not alone. Many people have never heard of it, until they or someone close to them is told they have it.
Interstitial lung disease (ILD) is the name for a group of conditions that scar the lungs and make breathing harder over time. The most common form of it is called idiopathic pulmonary fibrosis. “Idiopathic” simply means the cause is unknown. It is rare, it is serious and for many people it is terminal.
When someone is diagnosed, their family, their friends, and sometimes even their GP have very little experience of the condition. That leaves people searching for answers on their own.
A support group built by patients and clinicians together
That gap is exactly why W.I.L.D (Wessex Interstitial Lung Disease) support group was set up in 2013. It was created by a dedicated team of doctors, nurses, physiotherapists, pharmacists, psychologists, patients and carers from Southampton and Portsmouth.
We spoke to Dr Sophie Fletcher, Consultant Respiratory Physician at University Hospital Southampton and one of the clinicians who helped establish the group:
“We thought, let’s put together a patient support group where they can get information, but also have the opportunity to meet people like them.”
A place full of hope
Southampton Hospitals Charity is proud to support this initiative by funding the venue for these meetings and covering the cost of maintaining the support group’s website.
Twice a year, around 100 patients, carers and family members gather at Crosfield Hall in Romsey. They come to hear the latest research, ask questions, share experiences and spend time with people who truly understand life with ILD. Between meetings, the W.I.L.D. website keeps that support going with practical information, research updates and opportunities to get involved.
Every meeting is shaped by the people who attend. Research is always one of the most requested topics because every new development brings hope. Alongside expert talks, attendees can also take part in breathing exercises, physiotherapy, exercise, mindfulness and singing sessions. The team behind W.I.L.D. Support believes research is part of the picture, but not the whole picture, and encourages everyone to try something new.
Jenny keeps coming back
We also spoke to Jenny who was diagnosed with idiopathic pulmonary fibrosis at the start of 2019, aged 75. Like so many others, she had never heard of the condition before. Thanks to her GP she was diagnosed early and referred to Dr Sophie Fletcher’s ILD clinic. She has since taken part in several research trials at University Hospital Southampton.
When a W.I.L.D meeting was first suggested, she admits she didn’t think it was for her. She imagined a handful of poorly people quietly discussing symptoms over tea. Instead, she walked into a packed Crosfield Hall and has been coming back ever since.
Jenny said: “I can honestly say the way W.I.L.D. meetings are conducted, we feel we’re all there not just as patients needing support, but as team members in the campaign to combat, and we hope eventually find a cure for pulmonary fibrosis.”
Why your support matters so much
The room isn’t always filled with the same faces. This is for many a terminal condition, and every meeting carries that truth – which is exactly why the group matters. It offers information, community and hope at a time when all three can be very hard to find.
With your support, we can continue funding projects like W.I.L.D. Support and make a difference to patients like Jenny.
