Rheumatoid Awareness Day 2016

February 2, 2016 is the fourth annual Rheumatoid Awareness Day. Happy Rheumatoid Awareness Day 2016 The theme for Rheumatoid Awareness Day 2016 is the real rheumatoid disease, abbreviated with the hashtag #TheRealRD. Seven facts illuminate the stark differences between the media version of rheumatoid arthritis and the rheumatoid disease that’s experienced by so many. Sharing these 7...Continue reading      9 Comments » Read more

We Must Celebrate! Your Voice Was Heard, Despite My Limitations

Months – actually years – of my life went into the last couple of weeks. It’s a peculiar feeling when it all comes together in a moment. While there are important points to dig into from the annual ACR meeting, we should pause for a moment to reflect on where we are. (A recent Spear...Continue reading      26 Comments » Read more

Sleepless in San Diego

Each fall, Katie Beth and I travel to wherever the American College of Rheumatology (ACR) holds its annual scientific meeting. Last night, we arrived in San Diego. 1) This is huge. The Rheumatoid Patient Foundation (RPF) is presenting an exhibit in the Exhibit Hall. 2) I’m speaking with two other RPF volunteers in a session on Tuesday...Continue reading      12 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

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

RPF White Paper Indicates Patient Experiences Differ from Typical Perceptions of Rheumatoid Arthritis

Patient Experience and Rheumatoid Disease This site has always been dedicated to “presenting the patient story in a way that may increase understanding of the disease by doctors and researchers” as one of its three goals. The Onset Story project has been an important part of that, both for patients and for healthcare professionals searching to...Continue reading      18 Comments » Read more

An Event Especially for Gathering Encouragement

You’re not alone If I’ve said it once, I’ve said it a thousand times, “You’re not alone” with this disease. So many of us share experiences. And yet, we hear frequently about the loneliness that Rheumatoid disease creates. Community is a tremendous remedy and it’s what brings many warriors here time after time. Hearing “you’re not...Continue reading      15 Comments » Read more

The Best Rheumatoid Arthritis News Story I’ve Ever Seen

Click now to hear the news story as it aired February 4, 2013 on KPCC, the local NPR affiliate in South Central Los Angeles. Honest rheumatoid arthritis news story on NPR station Jose Martinez KPCC interview Jose Martinez, writer for OnCentral: Reporting on health and quality of life in South LA, first contacted me a couple of...Continue reading      30 Comments » Read more

Seeing Light and Shadows in Groundhog Day and RA

TODAY, February 2nd,is the first Rheumatoid Awareness Day. Read more below about how you can be involved. Amateur actress shares Groundhog Day's special place in her heart My sweet friend Steph, one of the bright treasures that I have gained from living with this disease, sent me a story in an email yesterday. I'll hope you'll enjoy it...Continue reading      2 Comments » Read more
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