Putting patients in the driver’s seat
How participating in research can help patients take control of their treatment
Maria Orozco Ramirez recently participated in an Arthritis Research Canada survey about Systemic Autoimmune Rheumatic Diseases. She has rheumatoid arthritis and lupus and has experienced serious, life-threatening complications as a result of both.
Maria knows that research is the key to finding answers for the 5.6 million Canadians with arthritis and she hopes it will, one day, lead to a cure. But for her, participating in research is also about taking control of her own treatment.
Why did you decide to participate in this research?
I have rheumatoid arthritis, so my joints are deformed – especially my hands and elbows. I have no strength on my left side. I’ve been on medication since 1999. I’ve tried methotrexate, gold injections…everything. I stopped Plaquenil because it caused problems with my eyes. And methotrexate caused a cyst and internal bleeding in my stomach.
I like to inform people about how bad it is to have rheumatoid arthritis, or any type of arthritis, and participating in research is one way to do that. If you don’t have it, make sure to exercise and eat well. My suggestion is lots of greens. Before arthritis, I was super active and I could have done anything. Now I’m not and I can’t be very active.
I also wanted to tell people about the consequences of taking arthritis medications. They maintain you, but they don’t cure you. Each drug has a cost – an effect on your body. I’ve been on prednisone since 1999. I’ve tried to stop it and my doctor has tried to stop it, but my body just goes into shock. We have cortisone in our bodies. We create it in our glands. When we give our body prednisone, the body stops producing cortisone. So over the years, I’ve had to stick with it.
In 2007, my heart started failing, but the doctors didn’t know why. They figured that all the medications weakened it. I had three heart failures – in March, August and November of 2007 – that led to open heart surgery and a mechanical mitral valve replacement. In January 2008, I started peeing blood and demanded a urine test. I ended up in the hospital again. And in February 2008, I was in kidney failure – both kidneys shut down. That’s when I found a doctor who treated me like a person and not a number. But he wanted to put me on dialysis. I said I would rather die. They did a biopsy and discovered that lupus caused the kidney failure. I wondered, why me? Why do I have all these autoimmune diseases?
What would you say to someone who has never participated in research before to encourage them to participate?
You learn things. And you have the opportunity to give your opinion and ask questions. I’m a transparent person. I don’t keep anything from anyone. Not everyone is like this. I would say to people to participate – take any survey. It’s a way to have a role in your care. People are naïve. Don’t take every pill the doctor gives you. I research everything about the different pills that doctors give me. I talk to people and they have no idea what medications they are taking. You have to ask and take control of your own care. It’s good to learn about your disease – by a survey, a questionnaire or talking to someone else who has the same type of arthritis as you do.
How would you say research has changed your life?
There is no curing me. But medicine and research maintain me. Every three months, I get a complete blood test. My joints are still in pain. I wish there was a real cure – that researchers could find something that would really do good without harming people. I want researchers to find the real problem – not just try different things. I want them to be sure that something will work. There is a lot of trial and error and that can cause harm. I have a hope in god that he will guide researchers so they can find the real cause of arthritis. It might not be in my time. But I hope so.
Note: Arthritis Research Canada is committed to leading research, finding answers and saving lives for the 5.6 million Canadians who suffer with the pain and disability of one or more of the 100 forms of arthritis. We involve patients in all aspects of our research as their lived experience with arthritis brings important perspective to our work. The views expressed in this article are the views of an individual patient and do not necessarily reflect the views of Arthritis Research Canada. Research participants are not required to share their stories as part of their participation in our research. Maria offered to share her story to help create greater awareness and understanding about the importance of patient participation in arthritis research.