Research Lurch
This is my fourth blog of RDBlog week which runs from September 24, 2018, to September 28, 2018. Today the prompt is:
Research – Do you incorporate research into your disease management? If you do explain how and what difference it has made. If not discuss why not. Help us understand any barriers you have experienced in using research about Rheumatic Disease.
So here is a confession, I do not. Well, I mean I usually do not. I love reading and thinking about research findings. I love attending ACR, and I love listening to the ideas and papers being discussed and debated. But do I use research? Not really.
Trial and Error
For all the information out there, RD is still primarily a condition of trial and error. We have little understanding of what causes it. We lack good information about what will work to control it and consequently we have almost no understanding of how to cure it (whatever cure means).
Heck, at present we cannot even make treatment of the condition affordable for people who suffer from it. Yes, I am excited about the latest small molecule treatment. I marvel at the progress we have made in the last 25 plus years since the introduction of biologic medications. I am grateful my hands still work after 18 years; but can I, the patient sitting here today, use research? Not so much.
The research I need
So, what would make research more accessible? Frankly, I doubt much is on the horizon. I need a test, to tell my doctor and me if the latest TNF or JAK inhibitor will likely work. I need something better than trial and error. I need to know the underlying cause of RA and Ankylosing Spondylitis that I suffer with. I need to know that if I avoid milk or cake or meat or ice cream that I have a good chance of feeling better. I need to know that I can tell others that wearing copper bracelets or carrying steel dice in their pocket will not help RA symptoms. Or Maybe not. Maybe walking backwards for 12 minutes per day or any of the other folk remedies do work? I know people I meet occasional swear by them. My body is already a walking chemistry set, I am not ready to toss in moldy honey with blackberries just to see if it works.
For me, that is the missing piece, and only research can bridge the gap. I need that research, so I can tell my grandchildren that just because I have RA and AS they will not necessarily have it. In short, I need research to be important in my life.
Participation is the key
I participate in almost every research study I qualify for. I give blood, track symptoms and complete a 15-page questionnaire every six months to establish what is and has happened to my body. I participate because I know someday researchers will unlock the secrets that will allow me to take actionable steps to improve my overall health.
Research is our way forward, and I welcome it. I appreciate it for my doctors who want the best information they can have about RA and AS. I want it for the long-suffering researchers who work on the secrets of our condition daily. I want it for my grandchildren.
Do I use research? Not really, but I sure do benefit from it.
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This is a really interesting take on the prompt, Rick. You’ve been more involved IN research at the coalface than I ever have. I’ve never been part of a trial, or participated in any kind of forum where what I have to say makes a contribution where it might be used towards more treatment options.
I’d like to be able to, but there are very few opportunities here to do that.
You would be amazing in a research study. I try to do all I can get from the little “test this glucose meter” to the more major studies. Of course we never know exactly what we are testing or when it might be a product. But when you see it and recognize the label colors or see a statement in the directions, it is a great day. See I did something, I mean or not.
Very good point. I’d say that I do do research as part of understanding my condition can be aware of new findings, but like you said, at the heart of it, it’s about much more than that. May it come soon.
Indeed, soon is not soon enough. In my country of course we are convinced that not for profit research is being written out, in favor of corporate research. I have to say that basic health research is research for all of us. Well can hope, someday.
Gutted that walking backwards for 12 minutes a day doesn’t work… 🙂
Did you try 13 minutes? 🙂