Here at Scleroderma and Raynaud's UK, we invest in research to save lives. The more research we can conduct into both scleroderma and Raynaud's, the closer we get to having better treatments and eventually a cure. Thanks to your support, SRUK is able to work with a number of dedicated, inspiring scientists who all endeavour to further understanding of the two conditions. We do this to improve the quality of people's lives, and ultimately to save lives. Each research scientist has experienced varying journeys to accomplish their many impressive achievements. Here is a little insight into the lives of some of the researchers we fund, what keeps them in the laboratory and the future of research.
What got your interest in scleroderma and Raynaud's started?
My interest in systemic sclerosis arose from looking after people affected by the disease during the early stages of my rheumatology training. I was concerned by the limited number of effective treatments that were available for patients and the large number of unanswered questions facing rheumatologists with regards to the causes of the disease. I greatly admired (and continue to do so) the fortitude and resilience of people who live with scleroderma. They are an inspiring group of people to look after and a continued source of motivation for me.
A number of people have inspired me along the way to develop my interest in scleroderma, among them my colleague at the RNHRD Ms Sue Brown MBE. Sue was supported by The Raynaud's & Scleroderma Association (RSA) for many years and was an incredibly hard-working, dedicated, caring clinician and a tireless patient advocate before her well-earned retirement. Ms Anne Mawdsley MBE was also a huge inspiration for me; strongly encouraging and supporting me personally to develop my clinical and academic interest in scleroderma.
I'm pleased to have seen improvements in the treatments available for people with scleroderma and recent evidence suggests our patients are doing better than previously but there is still a lot of work to do. Sadly, we remain some way off finding a cure for scleroderma but there are many people working hard to get us there.
What key areas do you think are going to be really exciting for research over the next 5 years?
I believe we are on the cusp of some exciting breakthroughs in scleroderma and expect this to translate into further improvements in patient outcomes over the next 5 years. Much of the vital 'underpinning science' (the laboratory work needed to identify new treatment targets) has now been translated into new drugs that are currently being tested in large multicentre clinical trials. We expect this will result in new treatment options for skin and lung involvement in scleroderma.
I also expect to see improvements in patient outcomes due to more widespread use of existing treatments. The falling costs of some drugs is allowing clinicians to use them earlier in the disease course and for different scleroderma manifestations (e.g. treatments initially restricted to management of pulmonary hypertension being used to manage Raynaud's symptoms). This could allow doctors to use drugs earlier in the disease course, potentially 'modifying' disease progression with fewer patients developing more advanced problems affecting the lungs, heart and kidneys. Scleroderma research is also providing us with better prognostic 'biomarkers' that are helping doctors identify people who are likely to remain stable versus those at risk of disease progression. These tools will also help doctors to treat certain patients more aggressively to prevent progression of the disease. The focus of research is shifting from improving survival to improving quality of life which will also result in important improvements in care for our patients.
You get to throw a dream, once in a lifetime, dinner party – who would you invite (Can be anyone from history or present)?
Maurice Raynaud would be there of course! Raynaud was feted by his contemporaries as a “physician, savant, philosopher and man of letters" and his contribution to medical knowledge was wide-ranging. It'd be interesting to discuss his important contributions to medicine through the prism of 150 years of scientific progress and see whether Raynaud himself would demand a reappraisal of the current classification of his enduring medical eponym. Having grown up on the same street as John Lennon (30-odd years apart!), we'd have plenty to talk about. I am a huge fan of his music, his honesty, his message and truly believe he'd still be making an important contribution to the public debate if he were still alive today. Winston Churchill would have been a marvellous dinner companion. I admire his determination, resolution and ability to pick himself after failure. I bet he'd have a few good stories to tell over coffee as well!
4. Finally, what is your one desert island disc?
Music is one of my great passions outside of medicine and so this is a tough one! I've chosen 'Beautiful Boy', written by John Lennon shortly before his death. It is packed full of fatherly advice, which I hope was of later of help to his son and inspiration for the song, Sean. I have sung the song to my own sons at bedtime. Amongst the many wonderful lyrics is the following one reminding us that there are others there to help us and to enjoy the moment:
'Before you cross the street, take my hand. Life is what happens to you while you're busy making other plans'.