Ever since my 2007 diagnosis with rheumatoid arthritis (RA), I have firmly believed (and now more than ever) that I can use my diagnosis to do something positive – for me and others living with RA (and other chronic illnesses).
As per the Run for Arthritis post, here are a few facts about RA:
- it is an autoimmune disease where the body attacks its own joints
- without treatment it leads to joint destruction
- current practice includes treating newly diagnosed patients aggressively with many medications in efforts to slow the disease or even put it in to remission
- there is no cure for RA.
As for my RA, I’ve been in remission since 2009 after being put on a lot of medications, which was difficult as someone who shied away from pills for even a headache. However, being a regimented person educated as a scientist, it was at least logical for me to understand the importance of this course of treatment. And ever since being put on my array of meds, I have only missed a few doses …. because of the 2d’s travels!
I have been in a very privileged position in terms of my RA, access to caregivers, and access to the latest knowledge. In fact, when I was diagnosed, I was working at an arthritis research network (yep, that seems like destiny, doesn’t it?), and I have also worked for a group that studies the genetics of autoimmune diseases and how best to implement that knowledge in to the clinic to provide personalized healthcare for patients. I cannot stress how very fortunate I am overall, given how destructive RA can be – in more ways than just physical damage.
A few years ago I decided to venture out as a science- and patient-consultant. Working on my own allows me the ability to do both consultant and volunteer work on my own schedule. So while I use my PhD in analytical chemistry to manage projects and write and edit grants and manuscripts, I also take that training and life experiences with a chronic illness, to bring the patient perspective to a variety of projects.
In terms of being an advocate for all things arthritis-related, my arthritis- and patient-related activities include:
- informal mentoring of newly diagnosed people referenced through friends and friends of friends of friends
- providing the patient perspective to research teams (informing what it’s like to live with RA to make projects more relevant to patients, translating results in to lay language for the public, and presenting at scientific meetings about the subsequent research results)
- reviewing grants to provide the patient perspective
- writing grants to include the patient perspective (I wrote a successfully-funded CIHR SPOR Patient Engagement Collaboration Grant for a client)
- advising on the landscape of patient engagement (in research, clinical trials, etc.) as well as helping clients work with patients and caregivers
- being Vice President of the Canadian Arthritis Patient Alliance
- being a patient collaborator on the Canadian Rheumatology Association’s Choosing Wisely Canada campaign (note: the first group that sought input and partnership from patients for this initiative)
- being named the Canadian Medical Association’s Wait Time Alliance first patient advisor
- participating in advisory boards for pharma to provide a patient perspective (e.g. RA: Join the Fight)
- providing interviews (tv, radio, film) about the patient experience, daily living with RA and invisible disabilities (e.g. Q&A here – scroll down to Patient-Scientist heading)
- speaking about the patient journey, living daily with a chronic illness, and perspective on how patients can be more involved (to pharma and other audiences)
- participating in anything else I can to advance awareness about arthritis and about the importance of patients as partners in their healthcare!
My passion is including the patient voice- whether it’s mine or that of others and helping people engage with patients to ensure we’re heard. I’m open to all kinds of new patient-related activities and projects. If you think you could benefit from a patient’s point of view or if you have any questions about my experience of living with RA and how I could bring perspective to your team or group, feel free to contact me here: