Let’s look at some simple examples. Think about the various ways which different immune systems (in different people) respond to a bee sting.

• One person has a feverish red lump for a week.
• Another person goes into anaphylactic shock.
• A third person is perfectly well with no perceptible symptoms.

Someone was once amazed to discover that each person has a unique fingerprint. Later it was shown that we each also have a unique voiceprint, iris scan (eye fingerprint), and of course DNA sequence. Truly, the closer we’ve looked the more uniqueness, we’ve found.

Turning to our immune systems, consider the differences in the ways each person in a family responds to a simultaneous cold virus (yes, a virus can mutate).

• They have measurably different levels of fever.
• They have varying degrees of congestion.
• The cold lasts a varying period of time.

If our immune systems are unique, it should not surprise us that we do not respond in identical ways to stimuli. This produces the variety we see with response to allergens in the environment or sensitivities to foods, of course. Our “immune fingerprint” is a plausible, albeit simple, explanation for this diversity.

When a disease like Rheumatoid prompts the immune system to accelerate its activity and malfunction by treating tissues in the host body as targets to be destroyed, we would not expect the results to be identical in each person.

• They have differing patterns of swelling, tenderness, stiffness, pain, or weakness, fever, fatigue, redness, or rash.
• They have dissimilar patterns of disease activity: constant versus flaring; a few joints versus all joints.
• They have varying degrees and types of destruction in joints or organs.

The “immune fingerprint” is also one way to understand the differing responses people have to immune-altering treatments. A minority has an excellent response to current treatments, some do not respond at all, while some enjoy remission. It would seem to be ridiculous to imagine that only certain patterns of expression of the “immune fingerprint” are considered valid patterns of immune disease activity, whether it’s “conspicuous swelling” (another new term, two in one day!), CRP, fever, or something else. Of course, the hundreds of comments on just the posts linked below, and tens of thousands of others by our readers demonstrate the effects of the “immune fingerprint” with RA.

One final thing: I received a coupon this week to share with you. You can use it on anything from the RA Warrior t-shirt store here through Feb 7, 2012!

Coupon Code: Premium$10
Discount: $10 off all orders over $40+
Coupon Code: Premium$25
Discount: $25 off all orders over $100+
Disclaimer: Please enter coupon code Premium$10 or Premium$25 before completing checkout. Must have the minimum subtotal to qualify for savings. Discount is applied to the base price and does not include taxes, shipping or additional charges. This offer may not be combined with other offers. Coupons valid to 02/07/2012 11:59 pm Mountain Time.

Recommended reading

• Rheumatoid Arthritis Swelling, Take Two
• Courses of Rheumatoid Arthritis
• Rheumatoid Arthritis Swelling: My Confession
• Severe Rheumatoid Arthritis Versus Mild Rheumatoid Arthritis

The other BIG program of AI is the annual national gathering of people with autoimmune diseases like RA, JRA, and AS. Here’s my report with pictures from last year’s G4 event. This year, I’ll be participating by presenting about being an e-patient and becoming involved in our own healthcare decisions.

I’ll give you 5 reasons to consider attending Sweet Memories G5!

Just PICK ONE!

1) I really want to see you there!  Meeting other warriors there will probably be the highpoint of my trip! Apologies to organizers Vince and Peter!

2) You might learn something! After all, they’ve worked for months to create stimulating programs!

3) Spending time with other people living with the same issues as you will help you feel encouraged, inspired, and empowered to fight on to have as much of life as possible!

4) Learn more about the Rheumatoid Patient Foundation (RPF) at our exhibit.

5) You’ll make sweet memories that will last a lifetime! If you come, you’ll pick this for number 1!

Details on Sweet Memories AI Gathering in Sugar Land Texas March 9-12

The Gathering will take place in Sugar Land, Texas at the Sugar Land Marriot in Town Square. Themed “Sweet Memories” the conference will showcase educational awareness with fifteen sessions from which to choose. The topics will include addressing parenting, nutrition, therapy, communication, and relationships, just to name a few. As an added bonus, Arthritis Introspective encourages its attendees to bring their spouses, caregivers, significant others, friends, and family to an educational track created specifically for support systems. The National Gathering also includes numerous social activities in order to strengthen the relationships of those attending.

Click here to learn more about the hotel, the schedule, or to register now.

EASY way to earn donations for the Rheumatoid Patient Foundation:

DON’T FORGET! If you registered to complete the brief anonymous survey to earn a $25 donation to the Rheumatoid Patient Foundation, PLEASE keep an eye on your email and be sure to complete your survey as soon as you receive it! Please also remind any friends who may have registered for the survey too.

Recommended reading

• I Want My Life Back
• RA Reality Versus “The Lie”
• Gathering Support for RA

I was in the familiar context of my pediatrician’s office – 6 years with 5 kids – that’s 30 years of service. And I was experiencing the familiar feeling of having someone make inaccurate statements about Rheumatoid disease. However, experiencing the two things together was entirely unfamiliar – and unacceptable.

I successfully suppressed my tearful desire to tell the guy how wrong he was. Care for my son’s hand – or health – does not depend on him, so arguing would be pointless. However, three things became crystal clear:

(1) No doctor can know everything about everything. But there’s one thing that makes ignorance unacceptable: arrogance. A doctor needs to know that he doesn’t know things, so he can continue to learn. Arrogance makes a doctor ineffective, unless he knows everything.

(2) I will not tolerate my son having the incompetent medical care that I’ve had. Remember my mother of a patient voice? If my son needs rheumatological care, he will see a professional that knows more about Rheumatoid disease than he does. It’s long been reported that general practitioners lack knowledge about RA.

 (3) It emphasized the great need for the work that the Rheumatoid Patient Foundation (RPF) has begun. As the RPF clarifies to the world the facts about Rheumatoid disease, people in many situations can experience less of such devastating ignorance that can cause confusion or delays in treatment. Erroneous notions about Rheumatoid disease obviously interfere with appropriate care decisions. We have a big opportunity to help the RPF help patients, but we have to hurry! Please read below!

But first, I know you’re curious, here are a few of the facts the fellow had wrong:

1. If an ankle, or knee, is swollen, “it has to be swollen here in this spot.”
2. “It would hurt and be more stiff in the morning” if it were RA.
3. An x-ray would help determine whether it’s RA (at this early stage).
4. Genetic testing gives no help in determining whether it’s RA.

Take a Survey & Raise Funds for RA Awareness – Hurry, This is a Limited Time Opportunity!

We need your help! Last year, the Rheumatoid Patient Foundation (RPF) was formed as the first and only non-profit with the sole purpose of improving the lives of people with Rheumatoid Arthritis. We have a great fundraising opportunity coming up soon, but we need to act fast!

Find A Cure Panel specializes in patient research for rare and serious diseases including RA–and they have an upcoming 15 minute anonymous online survey for those with RA and on medication.

If you complete the survey, FACP will donate $25 to Rheumatoid Patient Foundation.

If you would you like to participate, please contact FACP at info@findacurepanel.com
and put “FACP RA Survey/RPF” in the subject line.  This will pre-register you to receive the survey, which should be available next week.

Here’s the kicker: there are only 200 survey spots available and other organizations are competing for the funds. Please help us raise money for RA Awareness by pre-registering for this survey – the opportunity won’t be there for long! Thank you in advance for your support and helping the RPF continue to make an impact!

Recommended reading

• An important post about the Rheumatoid Patient Foundation on Dan’s blog!
• How Much Does Patient Testimony Matter?
• General Practitioners Need Basic Rheumatoid Arthritis Information
• Reliable Sources: Orencia Cough Side Effect & Notions of e-Patients
• Who Are e-Patients? A Simple Explanation

It seemed that changing the name of a disease is a decision that’s not in the realm of patients. We can’t do that. It’s a job for organizations. With money. Who already control things. Which are not working well for patients… hm.

What changed my mind?

1) You did.

Spending > 60 hours a week communicating with other people with Rheumatoid disease impacted converted me.

Without my encouragement, people continued to press the idea that the name change is necessary. There’s no way I could count how many people have told me that they see a name change as a key part of the awareness solution. I’m certain it’s a vast majority.

For a smile, click to see Nancy and I discussing how Rheumatoid Arthritis could become Rheumatoid Autoimmune Disease – and my talking with Tanya and Valeska about creating a foundation for Rheumatoid that would be the RA foundation people have dreamed of  – and a few days later, Julie encouraging people to use RAD instead of RA.

2) The facts convinced me.

The fact is that Rheumatoid is not a type of arthritis. Arthritis is one symptom of Rheumatoid disease.

As I objectively studied the problem, I pulled apart threads like tangled yarn. Examining the origins of the confusion about Rheumatoid disease leads to clear conclusions about what must be done to correct it. The word “arthritis” is one unambiguous thread. My learning process included writing > 600 articles for this site and other publications. For a quick overview, click here to see the list of 57 articles labeled Rheumatoid Arthritis Awareness.

3) An RA / RAD foundation: the Rheumatoid Patient Foundation.

A few say we must first spend our energy convincing other organizations that they must change their ideals or goals to align with those of Rheumatoid patients and give us what we need. Do people with other conditions or causes wait to be given whatever change they need? No, they demand it.

A year ago, we created the Rheumatoid Patient Foundation which represents Rheumatoid patients themselves. Momentum was tremendous during our first year and people are eagerly telling us they want to help more! That support will only grow as people learn of the tremendous plans the Board of Directors has for the coming year. You are wanted and welcome to join us! Click here to read how to play a part right now!

More support for the name change of Rheumatoid Arthritis

While I could list links to comments, and quote emails and blogs advocating the name change all day long, I urge you to read about a rheumatologist’s plea to change the name of RA, Response to An Identity Crisis for RA by Dr. R. Franklin Adams. OK, here’s just one more remark supporting changing RA to RAD from e-Patient Dave deBronkart with an important point of grammar!

What’s next for RAD?

The RPF is bringing fantastic ways to make impact with the name change and for you to help make a difference! Please follow the RPF now by clicking here and here so you will not miss anything! We can all participate in creating the awareness of Rheumatoid Autoimmune Disease / Rheumatoid Arthritis that we’ve all longed for. You’ll be able to join in incredible events coming up including a video contest, RAD petition, and more!

Recommended reading:

• Hear My RA Interview on KISS FM!
• What Can We Do About the Rheumatoid Arthritis Awareness Problem?
• Woman’s Day Rheumatoid Arthritis Article: A Video Appeal
• Use the RA Info button for accurate awareness: Rheumatoid Arthritis (RA) Information
• Rheumatoid Arthritis Natural Treatment: The Beachcomber Article

Pollyanna gets a bad rap

It’s stunning to me how some things are construed as opposite of what they are. Somehow Pollyanna has become synonymous with sounding dismissive and detached. We all know people who dismiss serious problems that have no easy answer. “Don’t worry, it’ll work itself out” or “I know you’ll find a way.” That’s nothing like the Pollyanna I know and love.

Who says Pollyanna was a stranger to adversity who glossed over problems with trite remarks?

Pollyanna gave attentive, perceptive responses to others’ dilemmas because her father taught her the glad game to cope with the misfortunes that plagued her: she lost her mother at an early age and lived in poverty without toys, siblings, or playmates. When her Christmas gifts consisted of cast-off items deposited into a missionary barrel such a pair of crutches, Pollyanna’s daddy taught her to earnestly look for something to be thankful for. Even with crutches for Christmas, her wise father pointed out how glad they could be that she didn’t need them.

If you’ve read the book, you know that Pollyanna soon loses her only advantage in life – her wonderful father. Coping with the loss and honoring his life, she pursues thanksgiving at every inconvenient opportunity. She determines to prove that silver linings are the rule and not the exception.

Gratefulness is always good, but inconvenient thankfulness is a higher calling

What’s inspiring about practicing thankfulness when circumstances are favorable? Not so much.

The more dedicated you are to it, the more meaningful gratitude is.

We can almost always find something to be thankful for – and we should. But when we have to search for it, it’s even sweeter – and more inspiring.

Easy to be thankful for right now

• Friends who stand by me
• A GP who is attentive to infections
• My kids’ health

Silver linings (The Glad Game)

• Seeing  my kids are compassionate people aware of others’ needs because of my illness
• Getting to travel to exciting places just because of RA
• Having a unique vantage point to do RA research and help others

What’s on your lists?

Recommended reading

• Be Your Own Counselor with Rheumatoid Arthritis
• You’re Not Lost and Michael Bublé Video
• All I Want for Christmas Is My CRP
• RA Reality Versus “The Lie”

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 images to enlarge and read the text or read the story on the WebMD Health Hero honorees page.

The WebMD Health Hero award was a big surprise when I first heard about it on Facebook a few weeks ago. The magazine publisher requested that I quickly hide a blog post where I mentioned it. So, I had to keep it a secret.

You can read a bit of the story behind Kelly winning the Health Hero Award on the blog at the Rheumatoid Patient Foundation site, rheum4us.org.

Recommended reading

• Courses of Rheumatoid Arthritis
• Rheumatoid Arthritis Hand – Safe Handshake
• Response to An Identity Crisis for RA by Dr. R. Franklin Adams
• An Introduction to the Genetics of Rheumatoid Arthritis (RA)

The last couple of months have been spent in almost constant preparation for the 2011 ACR Scientific Meeting in Chicago this week. During that time, I traveled to Philadelphia to speak at e-Patient Connections and spent a week in Rochester, Minnesota due to my work with the Mayo Clinic Center for Social Media Advisory Board. However, during that time, we also created materials and organized volunteers for the Rheumatoid Patient Foundation’s (RPF) exhibit at the ACR meeting. Then, Katie Beth and I spent 12 hours traveling last Friday. Then came the meeting week itself… that brings us to today.

Over the next few weeks, there are two storylines that I will report to you about this week:

1. The scientific events of the meeting.
2. The incredible response to the Rheumatoid Patient Foundation exhibit.

Even beyond those, I hope to share over the next few weeks, some of our experiences and impressions from this week. It’s difficult to describe how it is to be

• Surrounded by bright volunteers who share our mission.
• Working with friends who we love like family, but usually only talk to online & on the phone.
• Having discussions over donuts with doctors about participatory medicine!

I DID NOT FORGET about Social Media and emails! I’m very behind on replying to email due to this fall’s heavy schedule. Every day, I do as much as I can. The stories and notes you send to me are a treasure to me personally and important input to this community. I read and respond, but sometimes it’s delayed. I also look forward to catching up with everyone on Facebook, Twitter, and LinkedIn! We weren’t missing as someone said to me!! We have been doing the work of RA Warrior and the RPF!!

There will also be posts by me and others on the RPF blog, so keep an eye on that as well.

Bonus! Don’t miss Dana’s post about the RPF booth at ACR 2011 on her blog At The Water’s Edge.

Don’t miss these posts that go with this one!

• Mayo Clinic Video Interview: Patients at ACR Scientific Meeting
• Living with (RA) Rheum Disease Is Already Multitasking
• Behind the Scenes Video: Patient at a Social Media Conference

More here: Rheumatoid Patient Foundation Needs Your Help

What happens at the American College of Rheumatology Scientific Meeting?

“The ACR/ARHP Annual Scientific Meeting will be held November 4 – 9 in Chicago, IL, and is the must-attend event for anyone involved in research or delivery of rheumatologic care or services. Innovative sessions, ground breaking scientific abstracts, education developed based on practice gaps, the return of popular session formats, as well as hands-on skill training sessions are just some of the highlights,” ACR Annual Scientific Meeting page.

Why are patients interested?

In some ways, patients can be compared to a commodity that is traded at an ACR meeting. Without patients, there would not be rheumatology. Without patients, there would not be expensive pharmaceutical medications. Patients are the reason clinical trials and clinical practice training is needed.

Patients are interested in knowing what is being learned about “rheumatologic care or services.”  They want to know about the innovations and ground breaking science that can address practice and treatment gaps. For patients, those represent changes in the ways that their needs for adequate diagnosis and treatment may be met.

It’s as simple as that.

I will be glad about any information or hope that I can provide to patients from what I learn here.

Recommended reading

• IOM Pain Report Relieving Pain in America Gets Mixed Reviews
• Dear Bridget Duffy from a Rheumatoid Arthritis Patient
• ACR REF Rheum Research & Courage That Won’t Back Down

Together we can do more. And we’ve already begun!

Please join us! You are welcome and needed at the RPF! Watch this 3 minute video!

The mission of the Rheumatoid Patient Foundation is to improve the lives of people living with Rheumatoid Disease, also commonly called Rheumatoid Arthritis (RA).

Recommended reading

• 20 Tips for Managing Your Rheumatoid Arthritis Treatment
• The Path of Mercy in Medicine: A Tale of Two Doctors
• Unsolicited Medical Advice: Rheumatoid Arthritis and Chronic Illness
• When Rheumatology Is Sexy

Mostly, rheumatologists examine things that healthy people look away from: disability, deformity, and pain. The father of modern medicine, Sir William Osler, said he wanted to head out the back door whenever an arthritis patient came through the front door. Unfortunately many of us have lost a relative to it, so RA also means mortality – there’s nothing sexy about death.

No, there’s nothing sexy about Rheumatoid Arthritis itself, a most challenging aspect of rheumatology.

Remember Dr. Adams saying people might not respect rheumatologists because they’re thought to study phlegm? A PR campaign may be creating a sexier image for rheumatology, but what makes rheumatology truly compelling?

In the 1950’s, rheumatology was sexy

What about success? Success is certainly sexy. Everyone wants to be with a winner.

Mayo Clinic physicians Hench and Kendall won a Nobel Prize for the use of cortisone with Rheumatoid Arthritis. More doctors entered rheumatology. More patients showed up to be treated. I doubt Mayo Rheumatology ever built a back door to escape the patients. I’ve been in that hallway and I didn’t see one.

Success is elusive with Rheumatoid Arthritis

In preparation for the American College of Rheumatology Scientific Meeting next week in Chicago, we’re certainly getting lots of glossy, sexy advertisements in the mail. There’s an obvious attempt to glamorize various aspects of rheumatology. Companies emphasize “success” claims of their tests or treatments.

Success is certainly sexy.

Unfortunately, at least with Rheumatoid Arthritis, success has been elusive. Early cortisone use became a very un-sexy story of “adverse events.” Typically, modern treatments fail for 34% of patients; bring 50% improvement to about 44% of patients; and bring 70% improvement to only 20% of patients. Most improvement is temporary.

RA patients would certainly don our 4” heels and show a little swagger. If we could. Except for those of us who’d rather don our Brooks and run a couple miles. If we could.

To us, there won’t be anything sexier than the treatment that eventually works enough to make that possible. Except maybe the researcher who discovers it… or the rheumatologist who prescribes it.

For RA patients, rheumatology is sexy when it’s successful.

Read more:

Don’t forget to read my reply to Dr. Adams: Response to An Identity Crisis for RA by Dr. R. Franklin Adams.

“Rheumatology Practice at Mayo Clinic: The First 40 Years–1920 to 1960” by Gene G. Hunder, MD and Eric L. Matteson, MD in Mayo Clinic Proceedings.

Recommended reading

• The History of Cortisone and Rheumatoid Arthritis
• Prednisone Uses for Rheumatoid Arthritis
• List of posts on prednisone for RA