Patient Stories May Provide Real Help via Social Media

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70 Patient stories on RA Warrior

Today we add eight new stories to the RA onset story pages! Patients tell their own stories of how their Rheumatoid Arthritis developed and how they found a diagnosis. There are currently 70 Rheumatoid Arthritis patient stories on this site. There are 3 reasons I created these pages:

  1. I found other patient’s stories to be extremely helpful to me. I hope others will have the same experience.
  2. Together, we can create a more accurate picture of Rheumatoid Arthritis for family members, doctors, care givers, and the general public. We will show the world what RA does to a person.
  3. I believe that some clues to earlier diagnosis and treatment of Rheumatoid Arthritis lie in our stories. Perhaps the evidence we gather here will inspire scientists or doctors to be able to improve diagnosis or treatment for Rheumatoid Arthritis. Maybe we can even provide clues which will help lead to a cure for RA.

Patients find the stories helpful while looking for diagnosis or confirmation of symptoms. Could there be even more value in telling patients’ stories? Perhaps hearing someone who’s walked this long road gives strength to continue the fight against a harsh disease. Maybe there is encouragement to try new treatments or continue with a treatment in spite of difficult side effects?

Patient stories improve patients’ health

A new study in the Annals of Internal Medicine finds that hearing other patients’ stories effectively improves the condition of high blood pressure patients. A small study showed that just listening to stories from patients like them brought as great a reduction in blood pressure as medication for some patients. Their conclusion: “the storytelling produced substantial and significant improvements in blood pressure.”

Of course “Additional studies are needed to clarify the mechanisms through which storytelling works, address more long-term follow-up, and test similar interventions for different populations and conditions.” Patient stories will never replace medical treatment of RA, but they may be valuable for more reasons than we realize. Tracy Manning, MA, RA patient and lecturer of psychology commented, “Lists of symptoms and explanations of disease process are one thing, but personal stories offer a rich descriptive of what it is like to discover and live with a disease.”

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

7 thoughts on “Patient Stories May Provide Real Help via Social Media

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  • February 14, 2011 at 8:24 am
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    First, the raining hearts are cute.

    This is a great post. One of the things that has been so difficult for me is that there are very very few adrenal patients and I am different still in some ways from the ones I have found to talk to.

    If I didn’t have blood work, I would think I was crazy.

    M

    Reply
  • February 19, 2011 at 5:59 pm
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    I didn’t know that you can have RA and be sero-negative. It seems to be the story of my life…

    Reply
    • February 19, 2011 at 6:41 pm
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      Michelle, that’s a very pretty blog. Hopefully with early treatment you will do those things them forever.

      As far as tests for RA go, you might want to read throught the Tests section in the RA Map on the menu. Just click on the big E there. Also, there is a “Do I Have RA” Page on the menu that you might find helpful. Only about 70% of RA patients test positive for Rheumatoid factor, but there can be more to diagnosis. I hope this helps you. Feel free to ask questions.

      Reply
  • February 23, 2011 at 9:34 pm
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    Rheumatol Int. 2011 Feb 22. [Epub ahead of print]

    Something’s missing here: a look at the quality of rheumatology referral letters.
    Jack C, Hazel E, Bernatsky S.

    Department of Medicine, McGill University Health Centre (MUHC), Montreal, PQ, Canada.

    Abstract
    A convincing body of evidence points to an early window of opportunity for the treatment of rheumatoid arthritis. However, data indicate that in many cases, this window of opportunity is missed. Once a patient does present to their primary care provider, important additional delays in rheumatology assessment can occur. To report the results of our study assessing referral letters to rheumatologists, we examined referral letters received over a one-year period by one full-time rheumatologist practicing at a tertiary-care center. We found only a small percentage of referral letters made mention of the pattern of joint involvement. Just 17% of consults indicated symptom duration. Only 2% mentioned any circadian rhythm of symptoms (such as morning stiffness), and only 6% provided information about functional status. Almost two-thirds (62%) of consults specified only ‘joint pain’ in the referral letter. We provide objective evidence that referral letters sent to rheumatologists are often lacking in key elements of the medical history. This lack of information means that appropriate triage of referrals by rheumatologists is very difficult. As a response to this, we have developed, with family physicians and rheumatologists, a standardized referral template which is being pilot-tested. Our ultimate goal is to improve wait times for patients with urgent conditions such as inflammatory arthritis.

    PMID: 21340567 [PubMed – as supplied by publisher]

    Reply
  • March 1, 2011 at 3:43 am
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    Patient stories is the first thing I search for when I’m diagnosed with anything. Not the Mayo clinic’s idea of what it is. Patients. I can’t tell you how many sites said “you must test positive for RA” in bloodwork. Thank goodness I learned to ignore that and keep pushing doctors to do the right thing, because other patients experienced that ignorance, fought it, and won.

    Reply

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    Welcome to RA Warrior!

    Welcome

    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

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