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

Generic Thyroid Medication & a Levoxyl Recall

This is a managing illness story that’s currently unfolding. A lot of people with Rheumatoid disease also have thyroid disease. I’ve been a thyroid patient for over 30 years, but I seldom discuss it because it was so well managed until… Getting the right thyroid medication dose Thyroid medication doses are very individual. Levoxyl comes in 11...Continue reading      54 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

$10,000 Matching Opportunity for Rheumatoid Awareness Day

Another patient's story about what Rheumatoid disease is really like Last month, I shared what it’s like to live with full-blown Rheumatoid disease, taking the gloves off. To provide a glimpse into a world that most will never experience, I described a few hours of trying to move and manage with people who don’t understand what the...Continue reading      4 Comments » Read more

New England Compounding Center and Beyond: Medications Warnings and Dangers

When there are warnings of dangers related to medication, there is greater risk to chronic disease patients for two reasons: First, we may be more likely to use the drugs in question. And second, we are more vulnerable because we have a systemic illness. Several news reports over the past few weeks are especially relevant...Continue reading      8 Comments » Read more

Win a Pentax Camera! While You Spread RA / RD Awareness!

The PRIZES! FIRST Prize: Pentax Optio RS1500 Digital Camera 2 SECOND prizes: one of 2 $25 iTunes Gift Cards The CONTEST! What’s the contest about? For years, people who live with Rheumatoid Disease (PRD) have suffered because of confusion that RA is just a type of arthritis. Extremely low research dollars for RA Need for accommodations in employment situations Lack of understanding...Continue reading      1 Comment » Read more

We’re Warriors So Fighting On Is Just What We Do

August. We were exhausted and happy after a successful exhibit at the Rheumatology Nurses Society annual meeting. Five minutes later, I realized I was still buried in Rheumatoid Patient Foundation (RPF) projects preparations for the RPF’s next exhibit at the American College of Rheumatology Scientific Meeting in Washington, D.C. in November. And, then the hard drive...Continue reading      14 Comments » Read more

The End of the Methotrexate Shortage, Thanks to Pfizer?

Pfizer addresses U.S. methotrexate shortage that hurts RA patients Earlier this year the FDA approved an abbreviated new drug application, securing Pfizer’s right to sell injectable methotrexate in the U.S. Recently, Pfizer says they began shipping to customers. This move by Pfizer addresses an urgent shortage of methotrexate in the U.S. that has affected many Rheumatoid...Continue reading      21 Comments » Read more

What If Rheumatoid Disease Were Recognized, Properly Funded & Medically Understood?

Just think. What if you told people you have RA and they actually knew what that meant instead of dismissing it? What difference would it make if Rheumatoid Disease had comparable NIH research funding to understand what causes RA? What if there were treatments that worked for all RA patients? What if newly diagnosed RA...Continue reading      17 Comments » Read more
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