Tuesday 23rd April 2024
RAIRDA Survey
Have your say on the way your services are working for your Rare Autoimmune Rheumatic Disease (RAIRD)
SRUK have made a significant contribution in providing funding for this two-year pilot study, which is well underway. Initial results are promising, and the success of the study means that the implantable loop recorder can then be examined through a wider clinical study.
Every person with systemic scleroderma will experience their condition differently. This means that while some people may experience skin involvement, others may experience heart and lung involvement, which can be difficult to detect and treat.
Heart involvement is tricky to detect when it initially develops, however by the time it is evident it can be quite far in progression – leading to a poor prognosis. It presents in a variety of ways including arrhythmia, poor heart function and sometimes sudden death. We know that between 15-35% of people with systemic scleroderma will have heart involvement, but we still don't understand when and how this occurs.
Detecting heart involvement earlier is key to ensuring better survival. This is because earlier treatment and intervention can be given to people who are presenting with heart complications, thus saving lives.
Current methods of detecting heart involvement, like echocardiograms and electrocardiograms, only monitor the heart during discrete periods of time. The lack of continuous monitoring means that early symptoms, which may not be obvious, will be missed. Professor Maya Buch at the University of Leeds is carrying out a long-term study to see whether an implantable cardiac monitor can detect early heart problems in people with systemic scleroderma.
According to Professor Buch, the study “aims to examine for the presence of cardiac abnormalities in patients with systemic sclerosis, and their relationship to disease type, time course and severity." The data recorded by the monitor will be used to correlate against fibrosis patterns in the heart, particularly examining whether the poor blood flow leads to scarring in the heart.
Any evidence of the scarring process, blood vessel injury and poor heart function shown through the study can then be used to help individuals with systemic scleroderma who may not have shown signs of heart involvement yet, as they can be monitored to determine whether they present with any early signs.
SRUK have made a significant contribution in providing funding for this two-year pilot study, which is well underway. Initial results are promising, and the success of the study means that the implantable loop recorder can then be examined through a wider clinical study.
This study has wide ranging ramifications for the scleroderma community and has a huge potential to save lives.
While we support some amazing research projects, we at SRUK are unable to fund all the applications we receive. If you would like SRUK to continue to support more research projects like this, then please consider making a donation. This will mean we can invest in more projects and get all the more closer to finding a cure.
Tuesday 23rd April 2024
Have your say on the way your services are working for your Rare Autoimmune Rheumatic Disease (RAIRD)
Tuesday 19th March 2024
The Scleroderma and Raynaud’s UK sponsored 'Science in Medicine School Teams Prize 2024' contest is now open for entries. The contest aims to engage sixth form school students with science in medicine, and challenges students to prepare an ePoster with a novel vision on how to promote the health and well-being of individuals with Scleroderma and/or Raynaud’s. If you're interested in entering, or know someone in sixth form who might be, read on to find out more!
Wednesday 28th February 2024
As high bills continue to threaten the health of those living with the debilitating condition; SRUK is appealing to energy companies to provide financial assistance to them.