Positive Signs for Rheum Patient Activism | Rheumatoid Arthritis Warrior

Positive Signs for Rheum Patient Activism

Seeing is believing: rheum patient activism

emirites rheum patientsLast Friday, a meeting of the Emirates Society for Rheumatology (ESR) in Abu Dhabi heard a presentation from Katrina Thornley who has had Juvenile Rheumatoid Arthritis (JRA) for 27 years (since age 2). Dr. Mustafa Al Maini, President of the ESR, comparable to our ACR (American College of Rheumatology), called it a milestone for doctors and patients. He praised the concept of collaboration because by “pooling our knowledge and resources we aim to forge stronger links between healthcare professionals and patients that will in turn improve the management of arthritis…”

Dr. Al Maini said, “Rheumatology patients will be invited to speak and listen at seven further ESR meetings taking place across the UAE throughout the rest of the year. The events traditionally target practicing rheumatologist but have been expanded by the ESR to give primary care doctors and non-rheumatology specialists the chance to learn about the latest treatments for a range of rheumatologic diseases. This scheme is part of our new medical education programme that means whenever ESR meets we will make a slot available for patients to interact with rheumatologists. ”

Sound exciting? Keep reading!

Rheum patient activism comes to life

This spring, I almost fell off my chair when I read an article about rheum patient activism by Pat Rich in the Canadian Health magazine about Linda Wilhelm. I felt like the author was writing my very thoughts. I’ve argued for some of the exact scenarios. It was astonishing.

Linda’s advocacy work began by “identifying a failure in the health-care system to recognize just how serious the disease can be…” After years of advocating, she went “beyond traditional patient activism and is involved in actually helping researchers ensure that their work is meaningful and helpful for patients.”

Rich writes, “There is a growing recognition throughout the medical research community that patients are not only the final beneficiaries of medical research but also important players in determining what research gets done and how. Rather than just recording laboratory results of what a test or treatment can do clinically, more and more there is a requirement that new investigations produce outcomes that matter to the patients themselves.”

Successful rheum patient activism needs supportive doctors

Today, in another positive sign for rheum patient activism, a rheumatologist commented on our most recent discussion about swelling. The debate about whether visible swelling is required for RA to be active, painful, or destructive is one of the most crucial ones in rheumatology today. There are doctors on both sides, but for the most part, the issue unfortunately separates doctors and patients.

 So of course we welcome input of a doctor who wants to converse with us! Dr. Akerkar said:

Health care social media has been a very good eye opener for me in recent times. It give me the patient’s perspective; the story on the other side of the table. It has helped me improve on many counts. Take this voice of RAers to such heights that it falls all the Rheumie’s ears. It’ll tell them what books don’t. RAers should be promoting the good Rheumies they have met. Wasting time in diagnosing inflammatory arthritis is criminal as the time wasted is function lost in the long run…

Postblog: This was part of a discussion about RA swelling with Debbie who said that even after a trip to the ER, swollen hands, a 2 day hospitalization, and an elevated CRP,  her rheumatologist says her “hands just are not swollen enough” to be treated. She left in tears because her grandmother lived in a wheelchair due to RA.

Do patients in the US have similar needs to participate?

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

4 thoughts on “Positive Signs for Rheum Patient Activism

  • May 26, 2011 at 9:54 am
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    This awesome. I hope this will take hold in the US. I wonder when will it be enough for doctors to truly listen to us and to treat us aggressively as is needed. I will keep my eyes on this. Thanks Kelly

    Reply
    • May 26, 2011 at 10:01 am
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      thanks Cammie. I passed on this post to the ACR on Twitter. I know they’ll see it. I hope there are people there who are willing to work with our new foundation. I think there are. Wouldn’t it create so much progress?

      Reply
  • May 26, 2011 at 5:43 pm
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    Dr. Akerkar’s opinions are refreshing and I hope that more doctor’s begin to develop this philosophy. In my battle with the disease, I have interacted with far too many rheumatologists who were simply going by the book. The fact that I was disabled or in pain seemed not nearly as relevant as how my symptoms fit with those that were expected.
    Also refreshing is the idea that medical research should focus not simply on gaining knowledge but also on improving the lives of patients. While knowledge acquisition is certainly necessary to eventually improve the lives of patients, it should not be the ultimate goal in of itself.

    Reply
  • July 24, 2011 at 8:41 am
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    Kelly,
    I don’t know how I missed this posting in May, but today I clicked on the link, and it was such a welcome booster shot. You’re absolutely right that Dr. Akerkar and the steps taken by him and other colleagues to incorporate patient feedback with textbook guidelines, are what will produce better treatment options in the future for patients.
    All of us need to validate your efforts to push this along….you are our RA and JRA advocate, and we need to support you in any way we can. Thanks for being our beacon, though!

    Reply

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