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An Introduction to the Genetics of Rheumatoid Arthritis (RA)
RA Genetics 101: Glass half-full or half-empty? Part 1 Please welcome Professor Robert W. West, Jr, PhD as a guest on the subject of Rheumatoid Arthritis and genetics. Professor West uses his expertise...
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Excellent Rheumatology Care with a Horrible Rheumatoid Disease
RA Warrior is glad to welcome David Biundo to share some male perspective of living with Rheumatoid Arthritis. Over the last few months David’s rheumatologist has read and re-read his nuclear bone scan...
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Evidenced-based Medicine or Easy-bake Oven: Tension Between Evidence and Reality
This post was inspired by the article Patient Advocates: Flies in the Ointment of Evidenced Based Care by Jessie Gruman at Health Affairs Blog. Patient advocacy and evidenced-based medicine are both...
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Do Doctors Need to Love Patients?
The most admired leaders of our country have been the ones who trusted us, valued us, and actually loved us. President Reagan called America a “shining city upon a hill,” a biblical reference to the...
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Response to An Identity Crisis for RA by Dr. R. Franklin Adams
Recently, I read an article in The Rheumatologist (preceding a new PR campaign by the American College of Rheumatology), “An Identity Crisis for RA: A few suggestions to bring rheumatic disease the...
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The Path of Mercy in Medicine: A Tale of Two Doctors
Physicians enjoy a unique position in our society with unique opportunities to make a difference in others’ lives. With that powerful role, they can choose between a path of mercy and a path of...
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Rheumatoid Patient Foundation Needs Your Help
I was glad when it started raining today – it’s proper to rain when you cry. The Digital Patients’ Bill of Rights Things are happening fast. The E-Patient Connections conference was fantastic. The...
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Behind the Scenes Video: Patient at a Social Media Conference
Telling it like it is. On camera. It’s uncomfortable. It’s very hard to talk about harsh pain. Why does pain seem so embarrassing? I even gave birth in quiet agony a few times because of that. 3...
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Video Blog: Two Essentials with a Rheumatoid Arthritis Diagnosis
What do you say to someone diagnosed with Rheumatoid Arthritis? If I could meet to every person diagnosed with Rheumatoid Arthritis, I’d encourage them to Expect the best from treatments; Read all of...
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When Rheumatology Is Sexy
If medicine can be sexy the way a new car or an iPhone is, what about rheumatology? Is there anything desirable or exciting there? Possibly, according to rheumatologist Ronan Kavanagh who wrote “The...
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Video: Rheumatoid Patient Foundation Gives RA Patients a Voice
This week, the Rheumatoid Patient Foundation (RPF) conducts our first exhibit at the American College of Rheumatology (ACR) Annual Scientific Meeting. Beginning tomorrow, we’ll present our video The...
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Mayo Clinic Video Interview: Patients at ACR Scientific Meeting
Some of you may be puzzled about what I’m doing in Chicago. So here’s a brief summary and a video interview with Mayo Clinic News Blog telling why patients are interested in a scientific meeting like...
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Update from Chicago!
It’s our last day in Chicago! Katie Beth and I are going to be tourists for a half-day and then pack for an early flight. All day tomorrow we’ll be in transit. Here’s a quick update until I’m able to...
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Kelly Young Wins WebMD Health Hero Award
WebMD magazine chooses Kelly as 1 of 4 “Champions of Care”! Look what I found on my dresser when we got home from Chicago last night! The new WebMD magazine with yours truly in it! You can click on the...
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Rheumatoid Arthritis Awareness Is about Medical Care, Not Sympathy
My Bear had an appointment to see his terrific pediatrician today again about his swollen finger joints. She was home with a cold, but we waited an hour to see an alternate. The fellow didn’t seem to...
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You’re Cordially Invited to Make SWEET MEMORIES with Other Warriors &...
Our friends at Arthritis Introspective (AI) do so much practical work to help people living with diseases like RA (and adult JRA) to connect for in-person support. Many of the groups listed on our own...
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The Immune Fingerprint and Rheumatoid Disease
I’ve made up another term because I haven’t heard of anything suitable: “immune fingerprint.” It occurred to me that while we talk about how the disease Rheumatoid Arthritis (or Rheumatoid Autoimmune...
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What’s the Big Deal about Rheumatoid Disease?
Just how big of a deal is this disease? I suppose the fact that I’ve written several hundred pages about it is a clue to my opinion. Yet, most of those articles were written with intentional restraint,...
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I’m Not All Better, Just Too Polite to Whine; Yet Victory Is Still Sweet
Please don’t miss the news at the end of the post! I had to put A LOT on one page since it’s been a few days! My endocrinologist was so excited about my attending the ACR in November and winning the...
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Preclinical Rheumatoid Disease: There Are No Joints in the Lungs
My mom used to read to me John Godfrey Saxe’s 19th century version of a famous Indian legend, The Blind Men and the Elephant. I’m certain it contributed to my zealous love of evidence. Over the last...
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It’s Just Pain, Right? No, Dr. No, It’s Not
No, it’s not just pain A letter from a fellow warrior reminded me of something I’ve been wanting to blog about since last summer. Today was technically my last day in the clinical trial. They were...
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The 10 Fundamentals of Care for Rheumatoid Patients
Click here to download the printable PDF version of this important statement. What would appropriate rheumatological care for RA patients look like? The ACR tells us that the majority of Rheumatoid...
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Mayo Clinic Contest! 5 Ways Patients Can Make a Difference!
1) Rheumatology patients are teaching medical students in the Britain! The biggest difference patients can make is to help the medical profession understand their conditions better. Patient instructors...
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Woman’s Day RA Is Destructive, but Phil & Venus Have Cred
In 2009, I first encountered something I called “the PR problem” with RA. For three years, I’ve disagreed with Woman’s Day magazine over whether the Woman’s Day version of RA is correct. On the blog,...
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Johnson & Johnson RA Warrior YouTube Video
Inside story of a new YouTube video about RA Warrior A few weeks ago, a Johnson & Johnson video team visited our house. See my sons spoofing with the big video camera? The things that captivate...
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Painless Meme for Rheum Mates
Often, I begin a presentation explaining “being an RA patient doesn’t define me.” Then, I share some things that do. Like being a mother of five amazing young people. Growing up near D.C. and still...
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Confusion & Blame Surround Methotrexate Shortages & Recalls
U.S. caught off guard by methotrexate shortage Shortages of injectable methotrexate began in 2010 and some sources say may continue through 2014. Many have been surprised that shortages of such...
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Poll Shows Textbooks Wrong on Rheumatoid Arthritis Morning Stiffness
Morning stiffness is like morning sickness Did you ever have a baby? Did you have morning sickness? Was it only in the morning? Were you still pregnant? Everyone recognizes there is a lot of variety to...
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Rheumatoid Arthritis Awareness: Sugar Coat Cookies Please, Not a Disease
Why the sugar coating of Rheumatoid Arthritis in the media? Do you remember the insistence of Woman’s Day editors that patients were wrong and their article on Rheumatoid Arthritis was correct? The...
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5 Tricky Questions about Rheumatoid Arthritis / Disease
Five tricky questions I’m asked about Rheumatoid Arthritis with the shortest answers I can muster. What tricky question do people ask you about RA? And how do you answer? 1) Can I quit taking my...
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What If Rheumatoid Disease Were Recognized, Properly Funded & Medically...
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...
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Lessons from a Dumb Phone & a Disabled Computer
Last month I ordered a lightweight keyboard to use with an iPad. I planned to get one to downsize for travel, so I’d be more able to manage my briefcase alone when needed. I’m typing on that keyboard...
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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...
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We’re Warriors So Fighting On Is Just What We Do
Blue Button meeting at HHS (ONC)The iPad looking back from the front of the crowded meeting room. #HealthIT4u at ONC@Farzad & @Lygeia (in Walking Gallery jacket) at Blue Button meeting. Kelly and...
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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...
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Red Feet, Frankenstorm, Unexpected Sympathy, and Travel to PCORI Workshop...
Tiger and I left home for the PCORI conference today in D.C. in spite of the fact that many in the D.C. are evacuating from the area! Schools were closed on the Space Coast due to Hurricane Sandy,...
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“You Look Fine” – a Wall of Confusion Surrounding Rheumatoid Disease
If you’ve been diagnosed with “Rheumatoid Arthritis,” then we have a short poll for you of patient experiences with this disease! But first a few words about why this site exists for all of us....
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Do Not Kiss Me
Do not kiss me because I have a suppressed immune system… In “Kiss My…” a physician blog in Rheumatology News, Dr. Larry Greenbaum wrote, “I charged him level 5 for taking so much of my time, for...
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A World Where No One Suffers from Rheumatoid Disease
When you’re making any charitable donations, please remember the Rheumatoid Patient Foundation (RPF) is each of us helping all of us. The RPF Vision: A world where no one suffers from Rheumatoid...
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Textbook Rheumatoid Arthritis: Patient Input Will Replace It
A week ago Eric shared his dilemma and asked readers to share opinions concerning the treatment of his wife Kim’s Rheumatoid Disease. He provided the summary of issues he had given their...
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