Funding awarded to scleroderma ulcer project
15 March 2023
We’ve recently awarded funding for a study that could lead to a national self-care package for people with scleroderma who experience debilitating finger ulcers.
Thanks to the generosity of our supporters, we’re able to provide grants for projects that improve the experience of patients.
One such grant of ÂŁ9,064 will see scleroderma experts at the Royal Free Hospital work with their patients to co-design self-care opportunities and develop improvements in care for patients with scleroderma experiencing these ulcers.
Scleroderma is caused by the immune system attacking the connective tissue under the skin and around internal organs and blood vessels. People with scleroderma are particularly vulnerable to developing sores or wounds on their fingers, thumbs or toes, with up to 70% of patients likely to develop them at some point.
These ulcers are very painful, often take a long time to heal and can lead to complications that result in amputation or permanent tissue loss.
Patient involvement
Georgina, from Milton Keynes, has diffuse systemic scleroderma which causes internal damage to her lungs and oesophagus. She has experienced finger ulcers and explains how they affect her: “It literally affects everything I do. Not being able to squeeze toothpaste out of the tube or turn a tap, the decisions you make about what to wear, having to rely on other people to help you with so many routine tasks – it affects every part of your life.
“When you have them, you’re constantly on edge dealing with the pain and avoiding anything that will put pressure on the ulcer.
“I’ve been very lucky to be a patient at the Royal Free Hospital. I don’t believe there’s anywhere else in the UK that has a similar specialist centre and dedicated clinics for patients. They’ve helped me so much and I’m delighted that I have this opportunity to use my experience to help not just other patients at this hospital but all over the UK.”
The project
Tani Ngcozana, senior research nurse, pioneered the first nurse-led digital ulcers clinic in the country at Royal Free Hospital in 2012. Tani explained: “Thanks to this funding, we’ll be able to deliver this research project to explore how patients with these ulcers are currently supported and understand how they currently manage their ulcers and their healthcare needs.
“We hope it will lead to a range of support measures to help patients dealing with this distressing symptom and also help the clinical teams who care for them to understand more about how to support them.”
ÂŁ9,064 was awarded to the project. As well as patient experience projects, the charity funds early-stage research aimed at finding new and better treatments for scleroderma.
