What’s in a name? – A personal view (Personal Blog by Ailsa)

21 June 2018

I’ve lived with sero-negative, inflammatory polyarthritis for nearly half a life-time, (39 years), which I refer to as RA. That was the diagnosis I was given at the time, but along the way I was told I had the HLAB27 gene which people with RA do not routinely have. This particular gene relates to Ankylosing Spondylitis which is what my father had from before I was born. Also in recent years I have developed mild psoriasis although I’m not sure whether this is due to the disease process or a side effect of the many drugs I have taken to combat this dreadful disease.

So, in reality, I don’t have classic sero-positive RA, but a sub-type of what is a syndrome, with a variety of sub-types, rather than a single disease. The general public don’t really understand what RA is and, as you can see from my own disease profile, it’s complicated! 

Wikipedia describes RA as “… a serious, painful, and chronic (long-lasting) disease. Rheumatoid means relating to, affected by, or resembling rheumatism –“rheumatoid disease”. It’s interesting that Googles dictionary definition refers to ‘Rheumatoid Disease”. Arthritis means a disease causing painful inflammation and stiffness of the joints. I should explain here that RA is a systemic autoimmune condition. Systemic means ‘whole system’, so it doesn’t just affect your joints, it affects your whole body and can impact organs such as the heart, lungs, and eyes.  

RA and other forms of inflammatory arthritis are medical emergencies, but the general public don’t ‘get’ that. Even some health professionals don’t understand that. When the public view of RA is that it is just a spot of ‘rheumatism’ (whatever that is) and is something your ‘grandma’ has, it’s unlikely that our painful, serious and life-changing disease will ever get even the kind of sympathy or understanding it deserves. For example, I’ve seen time and time again in the workplace a colleague who has a trapped nerve, broken leg (which will mend) or sprained ankle, get more attention, support and acknowledgement than someone living and coping with debilitating RA.

Having lived with RA for so long and, since launching NRAS 18 years ago, speaking and communicating with thousands of people also living with RA, I know how very frustrating it is when others, without realising that they are causing offence, belittle the seriousness of this disease. Newspapers running articles on RA also invariably accompany these with pictures of elderly hands which clearly have osteo rather than rheumatoid arthritis. I don’t wish to minimise the pain or significance of having osteo-arthritis, but it is NOT the same as having rheumatoid or another form of inflammatory arthritis which are very different conditions.

One of the reasons I believe that the constant referral in the media to just ‘arthritis’ is that there are many charities and organisations around the world who represent all forms of arthritis and musculoskeletal disease and they often refer ‘arthritis’ rather than always differentiating what type of arthritis they are talking about. Usually whenever they draw attention to their cause with a case study, the case in question will be someone with RA or other form of inflammatory arthritis, or a child with JIA.

I’ve just come back from Amsterdam where I attended the EULAR (European League Against Rheumatism) congress. Across Europe, rheumatic and musculoskeletal diseases are referred to as ‘RMDs’. This is also problematic in my view as if you stopped someone in the street in Paris, Rome or Brussels and said ‘what is an RMD?’ I don’t think you would find many who knew. So getting the public to understand that there are 200 odd different conditions, some common and some rare, under this umbrella title goes much wider than understanding the difference between non inflammatory and inflammatory forms of arthritis!

So, we have a major public perception and awareness problem around RA and, I believe, RMDs.  If we carry on just using the world ‘arthritis’, to describe a range of serious and often life-limiting conditions, we will continue to perpetuate the misconception that RA is not very serious and something we all get a bit of as we age!

In an ideal world we would change the name from Rheumatoid Arthritis to Rheumatoid Disease and it would be wonderful if we had the funds to afford to run TV adverts to raise public awareness of RA, but sadly I am unable to do either. So, we’re stuck, for now anyway, with the problem. It’s just not feasible or possible for one small organisation in the UK to simply change the name of an internationally classified disease which was identified and named several hundred years ago! As a consequence, we will continue to work very hard in NRAS to do all we can to raise public awareness of the early signs and symptoms of the disease so that we can reduce the delay many experience in getting to a diagnosis. I know to my cost the importance of that window of opportunity to get diagnosed and treated within 3 months of symptom onset and we shall be taking part in the EULAR campaign ‘Don’t Delay Connect Today’ during World Arthritis Day in October to support the early diagnosis messaging. I have written an article for a supplement in the Sunday Telegraph last Sunday (18th) about the importance of new treatments and all the research going on in RA today, and with this week being our ‘RA Awareness Week’ you can expect to see interesting things being launched across social media every day from 18th -24th June. In the words of Nelson Mandela “Education is the most powerful weapon you can use to change the world”. Please do what you can to get involved and help us to spread the word, educate and raise awareness of Rheumatoid Arthritis, or should I say Rheumatoid Disease!

– Ailsa Bosworth