Susan Moore has been part of a public research user group for rheumatoid arthritis for five years, where she has been able to learn more about her condition and offer practical advice to researchers designing clinical studies.
I was first diagnosed with rheumatoid arthritis in 1995. I’d heard of the disease before and what it could do, and hearing I had it myself was the last thing I wanted. The symptoms were unbearable – severe fatigue, horrible pain in all of my joints, insomnia. My life changed completely. Simple tasks that had been second nature before I developed the disease became an ordeal: getting dressed in the morning, climbing the stairs, I couldn’t even get out of bed at one point.
And it isn’t only me that it affects. It’s had an impact on my relationships with family and friends. If I want to go down to Oxford to see my friend, I can’t just jump in the car and go straight there, because I’m unable to drive for that long. I’d have to book a hotel halfway there and do the journey over two days, but even then I’d be so tired when I arrived I’d need another day just to recover from the journey. Rheumatoid arthritis just takes over your life.
I started on biologics through the Kellgren Centre at Manchester Royal Infirmary, and they’ve made a huge difference. They’ve reduced the fatigue a lot and they’re much better than the cocktail of steroids and painkillers I was on before, which made me feel really strange and unwell.
It was at the Kellgren Centre I found out about the research user group that I’ve been in since 2009. Through the group, I’ve been able to meet doctors and researchers and learn more about my condition from those who are working at the cutting edge of arthritis medicine. But they’re also there to listen to me.
There are some things you just wouldn’t think of unless had Rheumatoid Arthritis so I can give the experts practical advice on how to run their studies. For example, you can’t ask a patient like me to lie in an MRI scanner for an hour – we just wouldn’t be able to do it. So I’m able to bring insight into the condition to doctors that improve their research.
One of the studies I was involved in designing aims to better understand the cause of rheumatoid arthritis. It will create a national database to examine and compare lifestyle and genetic information of those people who go on to develop rheumatoid arthritis against those who don’t. That really resonated with me, because one of my concerns when I was first diagnosed was whether my daughters might go on to develop the condition as well.
Any research that could help prevent the onset of rheumatoid arthritis for other people is great.
Watch Susan Moore as she describes living with rheumatoid arthritis.
- Patients and members of the public – learn more about how you can get involved in research, and follow us for our latest research news (@CMFT_Research).
- Researchers – did you know that involving patients in study design and implementation can improve participant experience and have a positive effect on study recruitment1?
Contact the Public Programmes team to learn more about how they can help you achieve your research goals and, in turn, improve people’s health.
1. Ennis, L. et al. Impact of patient involvement in mental health research: longitudinal study. British Journal of Psychiatry (Sept 2013) doi: 10.1192/bjp.bp.112.119818.
We’re investigating how best to use biologics with our patients
Biologic therapies are relatively new in the treatment of arthritis and when they were initially introduced it was difficult for doctors to identify which patients would benefit from them the most. Working with The University of Manchester, our doctors established the British Society for Rheumatology Biologics Register, which tracks which patients are prescribed biologic therapies and their progress.
Already, we have discovered information about biologics we did not previously know, such as that they work best in combination with other medications and that it is beneficial to patients to switch to another form of biologic if the first one they try is ineffective. We have also provided guidance on the side effects of biologics through our study. All of this goes towards helping doctors to provide the best treatment to rheumatoid arthritis sufferers the first time.