Research – RD Blog Week Day 4

September 27, 2018 at 4:24 pm | Posted in rheumatoid arthritis (RA) | 1 Comment

This is today’s RD Blog Week topic:

Research – Do you incorporate research into your disease management? If you do explain how and what difference it has made. If not discuss why not. Help us understand any barriers you have experienced in using research about Rheumatic Disease.

Nope, can’t say I do. When I was first diagnosed I researched everything I could get my hands on about RA, I had books, I read stuff online, I joined societies relating to RA, and what did I discover? Basically that if there is such a thing as a typical RA/RD patient … I’m not it!

I think if something changed in the way my disease affected me I would be researching frantically again trying to discover what was going on and why, but because I’m ‘lucky’ in that my RA is so mild, I work full time and have half a tonne of hobbies, of which RA is definitely not one, that I don’t have a lot of time to research something that isn’t really affecting me.

Last time I did any research was to prove a fully fledged practicing GP wrong when she told me that methotrexate was a steroid (it’s not), an anti-inflammatory (it’s not) and that the way it works in RA is completely understood (it’s not!) Fortunately she was not my GP – just someone I met socially!

What I do do, however, is participate in as much research as I can. I’m a member of all sorts of societies pertaining to pain, arthritis etc. and they periodically throw up research projects that are taking place, and whenever I’m eligible, I participate, and generally blog about it too, such as this one about a recent sleep study or this one about body image where i couldn’t post any results because the technology failed us and I never completed it! I’ve taken part in three or four studies in the last year or so, on top of the long-term ongoing epidemiology NOAR study that I’m part off, which I just had my ten-year anniversary visit with! I’m keen to participate in the hopes that the research will do some good somewhere along the line and help others, and also because knowing I’m not ‘typical’, I want that atypical type of disease presentation also represented in research so that people coming along and looking for things in future might find more that relates to them than I did, when doing their own research.

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  1. I am with you on my stand on research. I am in, if i can find it to participate in. Thing is I am in the middle of a research desert.


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