An interesting book coming out: There's been a bit of... - NRAS

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An interesting book coming out

MissMinto profile image
7 Replies

There's been a bit of debate on here about whether the name Rheumatoid Arthritis is really broad enough to cover the range of health issues that come under this umbrella so it's good news to read about a book that covers all of this.

It's due out in October, Kindle only at the moment, but here's the link:

ra.newlifeoutlook.com/rheum...

amazon.co.uk/Rheumatoid-Art...

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MissMinto
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helixhelix profile image
helixhelix

It's by Kelly Young, so also look at her site rawarrior.com as she has a lot of good stuff.

MissMinto profile image
MissMinto in reply tohelixhelix

Thanks for the tip helixhelix!

ITYFIALMCTT profile image
ITYFIALMCTT

Interesting and saddening that in C21 it's still necessary to remind medical professionals that RD has extra-articular implications - and that these should be evaluated and managed because it is a systemic disease.

Plus the added complications that inflammatory arthropathies still seem to take an absurdly long time before they are diagnosed in some regions/countries/people. Precisely because they are systemic and involve such a mulligatawny of symptoms in some people that are nonetheless logical for diseases that have such widespread metabolic and articular impacts.

Kelly is fantastic. Her website was my bible when I was first diagnosed.

Mall profile image
Mall

It is an interesting debate and one which I am undecided upon. I live in the UK and have a very specific RA diagnosis which alerts any medical practitioner to the severity and multi faceted nature of my disease and has helped me obtain expensive drugs, financial benefits and work related support. If I had been given a more generic diagnosis of Rheumatoid disease that encompasses all inflammatory diseases I would have repeatedly needed to go into long descriptions of my condition to obtain the best treatment and provision. I have often thought that rather than doing away with the terms relating to specific diagnosis of inflammatory disease like RA, lupus, etc etc, we should embrace these. Perhaps more research needs to be done into rheumatic disease to pin down that which does not easily fit into the current terms used for diagnosis.

I will however read the book and may convinced otherwise. I know my post may well upset the warriors out there and be deemed politically incorrect but I am entitled to post my experience that my diagnosis of RA has been very helpful.

ITYFIALMCTT profile image
ITYFIALMCTT in reply toMall

Interesting how differently we've interpreted this. I thought Kelly was arguing for RA to be reclassified as RD because too many people latch on to the arthritis part and consider it to be 'pots and pans' OA* which is a nuisance when it's family and friends but has greater implications when it's medical personnel who don't look for wider systemic complications.

I don't think (and I may be wrong) that she's arguing for the continuum of inflammatory arthropathies to be relabelled RD - just RA. So, somebody like you would retain your clear diagnosis and associated support.

I may be wrong.

*Of course, research increasingly indicates that even 'pots and pans' OA has flavours that have a strong inflammatory component and there may not be a clear distinction between this erosive OA and an inflammatory arthritis from symptomology at the outset (tho' definitely/probably in the bloodwork - at which point there start being complicated crossovers with seronegative inflammatory arthropathies).

Mall profile image
Mall in reply toITYFIALMCTT

I haven't read Kelly's book, so can't comment on what she is saying. I can only relate my experience. Language is a very powerful tool and words may take on different meanings within different cultures and settings. Within my setting it would diminish my diagnosis for it to be termed RD. Family friends employers all know and understand what RA is and its implications without having to be given detailed explanations but none would know what RD is. It would be viewed as a generic term encompassing a multitude of inflammatory diseases. If medical professionals don't have a good understanding of inflammatory diseases that needs addressing within their training.

Locally we have a lot to thank voluntary organisations like NRAS that have raised the profile and understanding of RA and other inflammatory diseases. Maybe this is lacking in some areas.

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