For many rheumatoid arthritis (RA) patients, the first step after receiving a diagnosis is to begin searching for more information about RA. In so doing, patients may find themselves immersed in a world of new terminology and concepts about the human body, the science of RA and potential treatments. Some patients take it even further and look to follow the latest from medical meetings, staying updated on new scientific studies.
Vectra Ambassador LaRita was diagnosed with RA more than twenty years ago, but she’s been a fan of following the science from the very beginning. “My background is more in the humanities area. I taught English at a local college for much of my career, and staying on top of scientific advances wasn’t a regular part of my daily life – until I was diagnosed with RA. I’m a proactive person, and when I received my diagnosis, I didn’t want to be ‘just a patient.’ I was driven to be a participant in my own care. I wanted to make sure I was doing things that worked toward my own health, and I wanted to feel comfortable with any therapies my doctor was prescribing. To this day, I continue to maintain this attitude because it’s so important to me.”
As LaRita explains further, it only makes sense for her to be well informed about her condition and to try to understand the science behind it. “I’m in my body every day, whereas my doctor only sees me once every few months. The more that I am involved with my own care, the more I am able to notice when something is not right or needs attention. Of course, my doctor has the knowledge and expertise about the science and medicine, but when I know as much as I can about what’s driving my condition and stay alert to my body, my doctor and I become true partners and are able to create a much better care experience.”
“Vectra® is a critical piece of my care experience. In addition to my doctor’s medical expertise and my knowledge of my own body, Vectra helps validate what I’m feeling by providing quantifiable data on my level of inflammation related to RA. Many times I’ve experienced having other bloodwork show results that don’t track with the way that I’ve been feeling, pointing toward a reading that my condition is less severe than the pain I’ve been experiencing; Vectra offers the kind of very specific information that allows my doctor to make tweaks until we really can get things on track. It’s huge when you can make those adjustments that allow you to feel so much better and have a big impact on daily life.”
“Staying on top of the science allows me to have better discussions with my rheumatologist. It’s normal for all of us to go into our appointments with questions. If I can answer some of those questions through my own research in advance, I find that the questions I bring with me to my appointment are that much better. I can ask about things that I’ve read and find out whether they apply in my case or how I should be thinking about how I’m doing things. I usually bring my questions on a small paper so that I can remember everything I want to ask. When I’m in that mode, I get a lot more accomplished.”
LaRita references a range of sources where she finds her information but notes that she especially loves resources that are created by patient organizations, such as CreakyJoints®. “Patient organizations are usually great about providing information that is intelligent but easy to understand. When you are researching a topic, it’s likely that you already know the basics and are looking to go deeper. Patient organizations can be great for helping you find information at that next level.”
Asked if she has any advice for fellow RA patients, LaRita noted, “I’d encourage people not to be afraid of the science. Right now, I’m quite comfortable reading some of the studies that are published at the annual medical meetings, but I got my start by going to a middle school librarian and asking for help. She showed me how to simplify the language so that I could get the gist of what was being communicated. Taking those small steps gave me confidence to ask questions and find answers that were suitable for what I could absorb at the time. The more I got into it, the more I understood, and the more interested I was to learn more. I had a real ‘a-ha’ moment when I realized that – although I’m not a scientist – I am a person who can learn scientific things. I encourage anyone who is interested to take the plunge and begin to explore!”
Are you interested in digging into more research around RA, but are not sure where to start? Vectra partners with CreakyJoints to share resources for patients with RA. A good place to start may be their RA Patient Guidelines booklet.