I happened to see a RAer just a few days back. A 30 yrs old young lady having RA since 7 years. She was already crippled by the time she came to me. Just a look at her lifestory.. gave up her college due to RA; unmarried & given up the hope of a family…all due to RA. Then.. I realised one more shocking fact. She lives in the metropolis of Mumbai.
Till date, she was never seen by a Rheumatologist. Shame on me as I have not been able to raise awareness about RA, shame on her family physicians as she was not referred to a Rheumatologist for such a long time. Shame on the sociey as she has been rendered a crippled at such a young age: something that could have been prevented.
As compared to diabetes, cardiovascular diseases, we have not been able to raise awareness about RA/ other autoimmune diseases. This remains an important cause of suffering of the RAers. The best way, I feel to go forward is the theme ‘Let’s move together’ started by EULAR. Not just the Rheumatologist but even the RAers & their relatives should take on this task of increasing the awareness about RA.
So then, what exactly can we do?
- Let us all (Rheumatologists as well as Raers) be proactive for RA awareness. RAers & their relatives in particular should be brand ambassadors (not of the Rheumie! but of RA). They are the best examples for the general public. I would urge even the RAers who have done well to be proactive for the betterment of their fellow RAers.
- All of us can be a radio station transmitting information about RA. Social media sites serve the purpose very well.
- Let us increase the noise level (obviously the right kind of noise) about RA on the internet as well as the community. More the noise level, higher the chances that it will be picked up by search engines & made available to those in need. Getting the right RA sites at the top (rather than the magic cure & pharma sites) will do a lot of good to all RAers.
- Let us all pursue our apex bodies like ACR, IRA to spend on raising awareness. Public demand from all RAers would definitely compel these bodies to act.
Arthritis support board 
For so many years we were visiting orthopaedic surgeons, family doctors for joint pains/swelling of knee of my wife.Nobody told us it may be RA. Nor any doctor guided us to rhumatologist. Question is
1. Are orthopaedic Surgeons or family physicians not aware of the existance of Rhumatology branch in Medicine? Are they so ignorant?
2.Or did they do it on purpose so as not to lose their patients?
3. If it is so, then Doctors- perticulary Orthopaedic Surgeons and MBBS qualified doctors made to be aware of this branch?
Last Saturday, I saw a coulpe from Kalyan – The Husband had serious disfigurement of his hands and they were taking treatments of Orthopaedic Surgeons for several years-the doctors gave many medicines exept the one which are key to the RA.
I feel, instead of patients, the Doctors need to be more aware more aout RA and Auto-Immune Diseases.
LikeLike
Dear Mr. Wagholikar,
Sadly, awareness about rheumat illnesses is low even among the Doctors. This can definitely be blamed on us Rheumatologists. We are few in numbers & we have to take more efforts in educating the family physicians.
Rheumatological illnesses do not find an important place in undergraduate curriculum too. We are too preoccupied with infectious diseases like tuberculosis, malaria & there is hardly any attention paid to rheumatological illnesses.
LikeLike
Rheumatoid arthritis affects approximately two million Americans, and tends to strike women three times more often than men.
LikeLike
Yes, awareness is crucial part of the problem. – Thanks, Dr. Akerkar for this case of RA awareness and for early diagnosis of rheumatoid arthritis.
My name is Tobias Stolzenberg, I’m employer at ORGENTEC Diagnostika, a company which is developing and distributing laboratory tests for autoimmune disease diagnostics. We do a lot of research in rheumatology diagnostics, in particular in lab tests for diagnosing rheumatoid arthritis.
Being aware of the importance of early RA diagnosis in Germany there have been (and there are!) a whole series of actions and campains to generate awareness of diagnosing the disease in time, before permanent damages of the joints come up. I carried together some examples:
In the year 2007 the Rheumacheck Express, a bus tour conducted by the Rheumazentrum Rhein-Ruhr, stopped in 24 cities in Germany. The tour was launched to educate the population in the Rhein-Ruhr area in Germany. People (and physicians as well!) should be sensitised to early symptoms of RA, where to find a specialist and that the “Rheumazentrum Rhein-Ruhr” (Rhine-Ruhr Arthritis Centre) offers networking competence. Furthermore the “RheumaCheck Express” should be evaluated as a screening instrument and as tool for an early diagnosis.
The RheumaCheck Express was open to the public six days a week between 11 a.m. to 6 p.m, and the event was announced in local newspapers and in national TV. The tour’s data were subjected to suitable scientific treatment and presented at the ACR Annual Meeting in 2008. The poster abstract has also been published in the Annals of the Rheumatic Disease, Ann Rheum Dis 2008;67(Suppl II):434: Evaluation of the “Rheumacheck Express”, a bus tour conducted by the Rheumazentrum Rhein-Ruhr: A new way to early diagnosis of rheumatoid arthritis
In 2009, the Rheuma Truck by the Rhine-Ruhr Arthritis Centre did pretty much the same: Aboard the truck (a really big truck, see the pictures!), experts from the Rhine-Ruhr Arthritis Centre offer both a patient questionnaire and the rheumachec rapid blood test (which is developed by ORGENTEC, the company I’m working for). To answer questions and to advise the visitors on the spot, rheumatologists are available at every stop on the tour.
Unfortunately, the Rheuma Truck website is only in German, but I do link to the English news release on the rheumachec website: The Rheuma Truck Tours North Rhine-Westphalia – Information and education about rheumatism. And on the Rheuma Truck website, you can watch the fotos, at the very least.
“Rheuma ohne Decke” (literally translated: “Rheumatism without Blanket”) was a wall-citylight campaign to show that joint destruction caused by rheumatoid arthritis can be hampered when the disease is treated in time. The pictures speak for themselves. Maybe someone in India seize this examples as suggestions?
Best wishes
Tobias Stolzenberg
– ORGENTEC Autoimmunity Blog –
LikeLike
That’s really innovative Tobias. Taking the awareness right to the doorstep.
I’ll try to implement it here.
Can you let us know more about RheumaCheck Express. How did you use it as a screening instrument?
LikeLike
How can we spread awareness amongst Docters ? Now at least our family doctor knows. Can’t we apprach Universities in order to modify the Medical curriculum at under graduate level ?
LikeLike
Yes. Certainly so. Educating the Doctors is equally important. We do it through various CMEs.
As far as the curriculum is concerned, it is the responsibility of the apex bodies like ACR, IRA (Indian Rheumatology Asso.) That is also the reason why we should pressurize the associations as well.
Amongst the Doctors, there is a lack of awareness about early RA & also the fact that RA does improve. So many of them still feel that there is not much available for RA & that it never improves.
Believe me; a lot needs to be done. But, if all of us work together; I’m sure things would change.
LikeLike
[…] Akerkar of Arthritis Support Board blog wrote “Let us all raise awareness about Rheumatoid arthritis.” Dr. Akerkar talks about how doctors, patients, and their loved ones should work together to […]
LikeLike
Dr. Akerkar, it is so nice to have support in the medical community! I am fortunate to have a compassionate doctor now, but I have been through too many who just wanted to drug and dismiss me, who wouldn’t answer my questions, who weren’t open to my concerns, who looked merely at the numbers and not at the very personal effects of this disease. I’ve had RA since 1997 (with secondary Sjogrens), and only recently have I begun to be proactive. There’s too much about RA that is misunderstood and misrepresented. Let’s change that! Thank you for what you’re doing!
LikeLike
Dear Jodi,
As you have correctly said ‘There’s too much about RA that is misunderstood and misrepresented’… all of us can change it TOGETHER. Though we sit across the table, we are on the same side as far as battling this disease & its effects are concerned.
LikeLike
Dear Dr,
Internet is one of the options to spread awareness about RA. Internet is for those fortunates who have literacy and access to it.What about other unfortunates?. Why not write a book or small booklet in the regional languages? I have surveyed many state govt libraries and found that there couple of books on joint pains which are very old dated back in 80s. Science has much prgrogessed since then. Govt libraries do make huge purchases of regional languages. Many books on health mostly on alternative therapies, ayurveda,naturopathy etc and general medical purposes.I have yet to see any english book on joint pains in any of the libraries. Under the circumstances it it is good idea to write a book on RA first in regional languages and then enlarge it’s scope to auto immune diseases.
We had made a start, but further progress still awaited. How can I help in RA’s cause ??
LikeLike
hello doctor akerkar…. wow i wish you actually start a rheumaticcheck Express.. it will be a boon for people like me who find commuting a big pain and this way you will be easily accessible to people like me who can`t reach you… i stay a t worli doctor.. how can i meet you?…
LikeLike