ACR REF Rheum Research & Courage That Won’t Back Down | Rheumatoid Arthritis Warrior

ACR REF Rheum Research & Courage That Won’t Back Down

“Hey baby, there ain’t no easy way out… I won’t back down.”

We just got back from Miami from the ACR Research Education Foundation (REF) RA Investigators’ Meeting where important research topics were discussed such as

On the ride home today, we heard Hotel California. Isn’t RA like this? “You can check out any time you like, but you can never leave.” Just today, I have a useless swollen hand, screaming shoulders, and stuck knees. Plus my neck… I sure do want a way out.

But I got home & played a different song: “I’ll stand my ground. And I won’t back down…  Well I know what’s right. I got just one life.” So I’m typing with 2 right fingers (I’m a lefty).

Some initial responses to the REF RA Investigators’ Meeting

1) Progress in RA will come with collaboration between specialties.

We have a long way to go, but there are cardiologists, epidemiologists, and pulmonologists working on RA. One who I talked with agreed with something I often say – that we are a couple of decades behind diabetes. But REF has begun to build inroads. One of the more interesting speakers was a cardiologist who began his talk thus: “I was not even aware until two years ago that RA patients have higher incidence of heart disease.” Now, he has a lab dedicated to studying it. This is what the REF is doing.

2) Collaboration with patients will also be necessary.

It is an obviously essential piece. We heard mention of the need for patients to participate in research by cooperating with studies or tissue donation. We heard discussion of how doctors should communicate to patients concerning meds. Yet the patients’ perspective is missing. One researcher did tell me about a new way the NIH is integrating the patient voice in specialties other than rheum and how we might bring that to rheum one day.  Another spark if hope!

3) I can’t back down even if I want to, since my RA won’t let me.

Miami on waterMeetings like this are well-established ivory towers. It’s uncomfortable for doctors to have a patient in the meeting, even as a reporter. They may not know about e-patients in other specialties or how that’s happening even with rheum in other countries.

There is also extreme irony to know how many people need rheum care or answers, including myself, and be in a room full of people who may hold some keys to it. It was a peculiar situation that only Katie Beth and I were aware of. Perhaps they assume we all have care equal to what they aim to give patients.

This did make me feel like shrinking back. How many times I’ve said I wish I could back down about RA and this were all just our exaggeration – but it’s not. So I’ll have to have courage to speak the truth every chance I get. “Courage is not the absence of fear but rather the judgment that something is more important than fear. The brave may not live forever but the cautious do not live at all,” The Princess Diaries.

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Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 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 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 fourteen years with unrelenting RD. See also https:/

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11 thoughts on “ACR REF Rheum Research & Courage That Won’t Back Down

  • June 13, 2011 at 1:09 pm

    I am sure that the REF has made great strides in patient / Doctor / disease awareness. I think with all of our help we will cut that “2 decades behind”, down to “presently”. I like to think that all of us in #rheum and other chats, forums, websites etc. Will bring the ivory towers down to size & help “real” people with real needs. Thanks once again Kelly for you insights and being our voice at meetings such as this.

  • June 13, 2011 at 1:42 pm

    Excellent article as always Kelly. Looking foreward to the day we catch up to diabetes, lol. Glad they are starting to focus on the heart and lungs, this might help us live longer and get less of the confusion with grandma’s arthritis.

  • June 13, 2011 at 2:01 pm

    One hand, one foot, slowly…one day at a time. We will get there. Looking forward to hearing more news. Thanks for putting yourself in that akward position for us Kelly. It’s draining work isn’t it? Get some much needed rest.

  • June 14, 2011 at 8:39 am

    Thank you for being our voice out there! Know that even though we may not be with you physically in that have thousands standing right beside you. Please don’t EVER forget that. Your hard work will bear fruit. The seed has been planting, the watering just begun! Thank you for all you do!!

  • June 15, 2011 at 7:42 am

    this is a good article Kelly. I hope that you remember the ivory tower is made by our pain and disability; it is up to us to make it a more realistic level – on the ground where the real people live. Thank you for a good blog (maybe Dragon Dictation (medical version) would help you with your typing?)

  • June 15, 2011 at 12:50 pm

    This is encouraging information Kelly. Thanks for traveling to this meeting in spite of severe pain to be our voice! I often wonder, what it will be like in 20 years for RA’ers. This I know is NOT the best time to have RA, but it could be worse like it was 20 years ago.

    I kept thinking you should have held up a little sign at the meeting saying:
    “GOOD Doctor needed, must have the guts to take on a high profile E-patient with severe unrelenting RA” 😉
    Ask and you just may receive!

    • June 15, 2011 at 2:20 pm

      So far, I’ve kept any notion I had of e-patient to myself. Maybe that would work. I felt like an intruder when I raised my hand, so it’s hard to tell. I did talk to a couple of people who I know really want to help patients so that does give hope to hold onto.

      Very nicely put about the best time – until there is a cure, there is not a best time. 20 years ago, patients had asprin (NSAIDs) and steroids. Unfortunately, I know too many patients who rely on these still to try to get relief.

      • June 16, 2011 at 1:13 am

        I hear ya, and lets hold on to that hope you found.


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