Many people living with rheumatic diseases are advisors or patient partners in research that share their lived experiences of arthritis and expertise with research team. Patient partners are involved in different ways like helping to develop research questions important to patients and giving advice through the stages of a project. In June, we launched a new patient partner in research in training program to expand our community to meet increasing demand for patient partners. We are pleased to introduce our first cohort of learners and patient partners in research!
- Nadine Lalonde
- Gisele Lamoureux
- Julie McKenna
- Linda Roy
- Anna Samson
- Amanda Swartz
I’m Nadine Lalonde. I have Systemic Lupus. I was diagnosed in 2009 but was ill since 2004. I am on permanent disability due to lupus since 2018. I was an employment counsellor for the government of Ontario employment programs and an instructor at Fanshawe College before disability. I was a past leader for the London Lupus Support Group and I am currently on the Patient Board for the COVID-19 Global Rheumatology Alliance. I look forward to assisting Canadian rheumatology patients, caregivers, and the rheumatology community.
Research interests: mental health and chronic illness, knowledge dissemination, lupus, grant reviews, and any project that brings on a patient from the start of the process.
My name is Julie McKenna and I live in Saskatchewan. I was diagnosed with Rheumatoid Arthritis in 1997, and since then, fibromyalgia and Sjogren’s. I have been on numerous combinations of drug therapies since diagnoses. Currently, my disease and chronic pain are fairly well managed through the use of medications, stress management, mindfulness practice, and regular daily exercise. I have two master’s degrees and my career focus has been evidence-based management decision making. I am very grateful for the opportunity to be involved as a Patient Partner in Research.
Research interests: Social, cultural, and population health research, health services research like the efficiency of health professionals and healthcare system, clinical (medication, devices, treatment regimes)
Anna Samson (they/she) is a 23-year-old desi, queer, disabled person living near Toronto, Canada. They are a writer and poet studying English at McMaster University and an advocate for disability and mental health. They have ankylosing spondylitis, fibromyalgia, and more. They have experienced symptoms since they were 15/16 years old and now permanently use a cane and frequently use a walker to ambulate. They are passionate about using their intersectional lived experiences to raise awareness for chronic illnesses, disabilities, and mental health. Anna is an ambassador for Healp.co and Take a Pain Check where they raise awareness for chronic illnesses and disabilities and create content about living with rheumatic diseases. They are also a contributing writer for Health Union where they write articles informed by their lived experience for axialspondyloarthritis.net, chronicdryeye.net, and insomnia.sleep-disorders.net. You can find more of their advocacy work on Instagram and TikTok @chronicallyillxo and Twitter @chronicallyillx.
Research interests: Anna does not have any specific areas of interest.
My name is Gisele Lamoureux. I am retired after having two total knee replacements in 2014 and 2015, due to osteoarthritis. These were not completely successful, as the operations left my knees incapable of bending the way they should. In 2018, I was diagnosed with rheumatoid arthritis. I am declared “stable” and take methotrexate and hydroxychloroquine to keep inflammation at bay. I am as active as I can be, but some activities can no longer be in my repertoire. I walk, swim, and do Aquafit and stretching exercises as often as possible.
Research interests: gut biome and arthritis, effect of exercise on patients with arthritis.
In 1994 I was diagnosed with Rheumatoid Arthritis at the age of 34 at the peak of my Career as an Administrative Assistant with a large Agriculture Chemical company located in Stoney Creek, Ontario. I attended Canadore College after high school and received my Business Administration Degree. Since diagnosis, I was involved with the Arthritis Society as a volunteer for several years in the Hamilton area. I became permanently disabled in 2002 and have been now 20 years later. I continue to support the Arthritis Society as often as possible and advocate for myself and others with Arthritis issues. In Hamilton I also participated in a pool therapy program which aided in keeping me mobile. I presently relocated to New Brunswick in 2014 with my husband of 27 years and our fur babies.
Research interests: Linda does not have any specific areas of interest.
My name is Amanda Swartz, and I was diagnosed with Rheumatoid Arthritis when I was about 11 years old. This disease impacts every aspect of my life and is a challenge every day.
Research interests: Amanda does not have any specific areas of interest.