Research couldn’t happen without volunteers – we depend on patients and healthy volunteers not just to take part in studies but also to help shape the research we do.
Here Salford Royal patient Cathie Larder explains a little about why she decided to take part in a recent multiple sclerosis study:
I was diagnosed with relapsing remitting multiple sclerosis over 10 years ago – about 85 per cent of people with multiple sclerosis have this form, where you have attacks of symptoms that come and go.
My disability has progressed during that time and I can no longer work, have an adapted car and mobility scooter.
I have, like most chronically ill people, made life changes to combat my declining health. Changes in work, diet, exercise and stress management have always existed alongside medication and therapies.
When a new disease modifying drug was announced as pending approval I was delighted.
I discussed with my multiple sclerosis team when I could have access to the new drug. The opportunity to get it straight away by taking part in a study made me ecstatic and I begged to be let on to the study. Then success :)
The study was really easy to be a part of; easy to follow procedures, great tracking gadgets and a lovely team to support me at all points.
The regular check-ins with nurses and neurologists were fantastic, giving me the opportunity to ask any questions about my general health and the study.
I was always treated as a person rather than patient or study number – I never felt like I was just a list of symptoms.
I would recommend taking part in research to everyone. I have had health benefits, helped other multiple sclerosis sufferers and have felt much more in control of my health. I have already signed up for another study which I feel I will definitely benefit from again- keep bringing them on!
UPDATE: Cathie’s research treatment dimethyl fumarate (Tecfidera) is now recommended for people with ‘active’ relapsing MS.