10 Things I Wish I Knew 10 Years Ago About Rheumatoid Arthritis

Why wonder about 10 things I wish I knew 10 years ago? January was my rheumaversary. Yes that’s a new word. But it’s pretty clear what it means. Over the past few months I’ve been pondering what it means to live a decade with unrelenting rheumatoid disease. What does my future hold? There is so much...Continue reading      25 Comments » Read more

PCORI, Is It Worth It to Include Patients?

The patients who read this blog are like dear brothers and sisters to me. I’ve met many in person and it’s like a family reunion. The RAW website and blog obviously speak to others as well – lay and professional caregivers, rheumatology industry, and sometimes the larger patient engagement movement. We’re working hard for change...Continue reading      6 Comments » Read more

Gatecrashing: The Story of Rheumatoid Patients at the ACR Meeting

It’s bedtime here. How about a bedtime story? Once upon a time in Philadelphia- ACR 2009 After being diagnosed with Rheumatoid Arthritis in 2006, I read some articles from reliable hospitals like Johns Hopkins. Sometimes I looked up symptoms online or read patient comments on large websites like Health Central or WebMD. Eventually I entered discussions with...Continue reading      24 Comments » Read more

Do Patients Know Enough to Talk about Medical Topics?

The e-patient movement The movement for prepared, engaged patients and shared decision-making is international. It is recognized and supported by people in positions of power at many levels. Organizations, think tanks, and government agencies study the movement, often supporting it in an effort to advance care, reduce mortality, and lower costs. It is not patients versus...Continue reading      20 Comments » Read more

Shared Decision Making and Rheumatoid Disease (RD)

<<Back to Toolkit for RD care page Partnering with patients makes sense A good physician helps patients examine options and works alongside them to find that best possible plan of action. Patients are viewed as partners in their health decisions. Both physicians and patients bring expertise to a consultation: Physicians know about medical options, and the risks and...Continue reading      Comments Off on Shared Decision Making and Rheumatoid Disease (RD) Read more

Rheumatoid Arthritis Ruined Her Elbow, But Nothing Could Break Her Hope

Research of an engaged patient rescues her elbow I hope you enjoy this inspiring story of a young woman’s struggle to get the best treatment for her elbow destroyed by Rheumatoid Disease (RD). Carolyn is a brave patient who researched to find a procedure to relieve her pain and restore movement to her elbow. She illustrates...Continue reading      24 Comments » Read more

Happy Birthday RAW! The Day I Could No Longer Stay Silent

This week the British Medical Journal published my article which they titled: Doctors’ understanding of rheumatoid disease does not align with patients’ experiences. But first, today is a very special day. Today begins year five of RAW Four years ago today, RA Warrior was born. I’d been studying, writing, and talking to patients for a few months....Continue reading      35 Comments » Read more

Words of Help From a Friend We’ve Never Met – Until We Do

Isn’t life full of special coincidences? Some even call them “God-incidences.” Circumstances show know that life is not all random, but the right words are often there at the right time – no matter when they were written. A couple of special coincidences occurred in February when I was in Washington. As my friend Leslie and...Continue reading      2 Comments » Read more

Health Data Is Like Yogurt: Full of Possibilities

Show me the data! Enjoy a laugh with this short adaptation of the legendary “Show me the money” scene from Jerry Maguire created by Dr. Eric Topol of Scripps Translational Science Institute. “Show me the money” has become a kind of motto that also reminds me of Wendy’s old “Where’s the beef?” ads. People want to...Continue reading      3 Comments » Read more

What Drives Patients to Get Engaged in Healthcare?

Did you ever forget what you were about to say? Last year when I testified at an FDA advisory hearing, I couldn’t even remember my name. I swear I could feel my heart leaping six inches in front of me. It was unexpected because I’d recited my five-minute speech dozens of times from memory. How...Continue reading      15 Comments » Read more

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