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.

Splints are not Glamorous

When I was first diagnosed I saw an occupational therapist who recommended that I wear resting splints at night so that my hands and wrists would feel better in the morning.  They are quite effective for that and I have worn them for 25 years - of course they need to be replaced every few years.  To deal with the fact that plastic can make you feel very warm, even with small ventilation holes in it, I cut up cotton socks to wear as liners.  I posted these pictures of the resting splints that I use for my hands and wrists at night in my online support group.

This is the comment I got from Judy after she saw the pictures.

"Your hand/wrist splints look very much like mine.  I don't have to wear them much anymore.  I used to wear them every night.  One night, my arms got stuck together with the Velcro on each splint.  I had to have Jim help me get them separated.

I can put them all on and look like I am ready for Halloween. You should see a box in my closet - I have about every kind of splint you can think of in the box plus ace bandages.  I have all kinds of ankle wraps.  I used to go out of the house looking like some kind of a mummy with all of my wraps, splints, etc."

So that really brings home the glamour, or lack thereof, of taking care of yourself.

For my fingers I have found a more stylish and very effective alternative. Silver ring splints keep your finger joints in a good position and look like up to date and unusual jewelry. The most frequent use for them is to correct a swan neck deformity (love the RA vocabulary). I can show you a very obvious example of that, and will, but be aware that with more effective drugs and treatment you don't see fingers like this so often anymore.

So you see here the finger without the splint and then with it. Showing these pictures almost feels like stripping. Unless I am demonstrating textbook examples for medical professionals my fingers are very seldom front and center

The silver ring splints can be used for other hand problems as well (like EDS for example) and can make joints more functional.

                                                                          digisplint.com

I have read clinical studies that say that results of using splints are inconclusive. There are a few reasons for that lack of consensus. One is that people find them uncomfortable or ugly so they don't continue wearing them and leave the trial.  In my opinion the other reason is that those who run the studies would have to follow the people for many  more years than their funding would last to be able to see a difference, and would have trouble finding a control group who would agree to participate and not use anything.

We're all so individual with our autoimmune diseases.

                                                                     CafePress.com

I have more splints but not more pictures, so I will follow up with more in the future. I'm like Judy. A whole box of splints under the bed.  As they wear out. I don't throw them out, just in case.