Third Annual Rheumatoid Awareness Day

February 2nd was Rheumatoid Awareness Day. You can find more about the history of this awareness campaign here at the Rheumatoid Patient Foundation.

Happy 3rd Birthday!

This symbol of the day - the groundhog and the tie-in to bringing rheumatoid disease out of the shadows seems particularly poignant.

From Rheumatoid Patient Foundation

Every day when I wake up in the morning it feels like Groundhog Day. I don't have the same bed and same clock the way Bill Murray did in the movie, but the same aches, pains, fatigue and deformities are there every morning when I wake up. Despite my carefully cultivated optimism and the best efforts of my doctors and myself at the best care, in my case rheumatoid Disease doesn't go away and doesn't give up. 

Compared to people who developed RD earlier in their lives, in particular the mothers of two friends, I am a glowing picture of  health. It's obviously true that treatments are better now. We used to see many people with permanent deformities or in wheelchairs in Rheumatologist's offices where now most of patients look quite healthy. The effects of RD are less visible, and rates of some types of joint surgery are decreasing.

In my volunteer work as a Patient Partner, which is a program in which trained patients teach medical students about musculoskeletal problems, the person I am most often partnered with is almost the same age as I am but with a later onset and more effective treatment. It is a diagnostic challenge to see her visible symptoms.

We need to increase awareness of Rheumatoid Disease and the effects on patients among the general population.

We also wish there were a campaign to educate family doctors to recognize RD faster. The opportunity to have it go into remission is only a short period of time after it begins. They call that the window of opportunity. If even twice as many people could achieve remission the costs of RD would be much less.

The other area that needs attention is research funding.

To use statistics from the US as an example there are 50 million people with autoimmune disease and 11 million with cancer in the population.  Autoimmune disease is the poor cousin in this equation.  Cancer is estimated to be receiving $7,762 million this year (2013) compared to $872 million for autoimmune disorders.   

Autoimmune disease is blue. Research money shows on the right

 This chart compares cancer incidence and funding with autoimmune diseases. You can see how unbalanced this is. If we had even half as much money for research in autoimmune disease as there is  for cancer we could see huge strides forward for new and more effective treatments. Maybe the new drugs would even be affordable.

So today is the day to let more people know about Rheumatoid Disease. "Not your grandmother's arthritis!"

Here's a link to last year's Rheumatoid Disease Awareness Day post.

Behind the Mirror of Self Management

I was reading a study on PubMed: Sorting Through The Evidence for the Arthritis Self Management Program and the Chronic Disease Self Management Program.

It was written in 2011 and is an analysis of previously published trials and articles about the two different self-management courses. Teresa J Brady, PhD is the contact person on the study which was done by a team of researchers.  She is presenting at the American College of Rheumatology (ACR) this year in a session that includes Kelly Young, aka RAWarrior, Dr Jeffrey Curtis and Elizabeth Riggs, RN. They'll be discussing the ways doctors can enhance their practice of medicine using patient engagement and self-management support strategies.

Through reading on the Rheumatoid Patient Foundation website I learned about the talk at the ACR and so looked to see what Teresa Brady had published. She sounds as if she is immersed in the field of self-management.

Taking a self management course is an eye opener for a chronic disease patient. Whether your coping skills are excellent or you are not so confident, you can learn more.  I took the course twice - once online and once in person. They were both effective in similar yet different ways. 

                                                 This is the book used with the online Stanford course

The online course is more convenient and is accessible no matter where you live. The other members were really supportive and helpful at all hours of the day and nigh when it was convenient. However there is no substitute for real people. The real-life course I attended is offered by The Arthritis Society in Toronto and other centers in Canada.

Social engagement is said to be a factor in living a long life. Do you think that online social engagement is as powerful as being involved with real life people? Also I have heard it said that the best way to live many years is to have a chronic condition and take very good care of it.

When I mentioned Behind the Mirror of Self Management I was thinking of the scene in The Wizard of Oz where Dorothy and the Tin Man,Cowardly Lion and the Scarecrow find that the Great and Powerful Oz is just an ordinary man.

In the case of self management the person behind the mirror is also an ordinary person. It's us.  We're the great and powerful people in self management.  No matter how good a program is we are the ones who make it work for ourselves and the others in it.

There is proof of benefits based on the results in Teresa Brady's paper. The idea that changing some of your behaviour can change your heath is not a new one. It's tried and true but when you suddenly find that you are sick it's hard to get past the psychological impact that can cause depression and anxiety. "Health distress" was a phrase that applied to me for years after diagnosis. 

Sometimes I felt that doctors were my main social contacts outside of work and home. Obviously that was a situation that needed work.

I would say that if you have never tried a self management course that it's a good idea to give one a try. Then if your doctor comes back from the ACR ready to adopt this strategy you can give him the benefit of your own insight. That would be empowering.












This year in addition to our exhibit booth, RPF Founder Kelly Young, RPF Advisory Board Member Dr. Jeffrey Curtis, and RPF Member and Registered Nurse Elizabeth Riggs, PhD will be speaking together at one of the sessions. They will present along with Theresa Brady of the Centers for Disease Control & Prevention, for a combined session titled: Enhancing Clinical Practice With Patient Engagement and Self-management Support Strategies.