I was a typical fourteen-year-old - hanging out with my friends at the mall, involved in school sports, piano lessons and competitive highland dancing. Just before beginning grade nine, my hips and arms became so sore and stiff that I had to miss a highland competition. This was the beginning of my life with Juvenile Rheumatoid Arthritis. It took seven months to be referred to a rheumatologist. At 16, my rheumatologist insisted I check into an Ottawa hospital where for the first time I felt relief from the pain and inflammation.
As a result of the active advocacy of my parents, I started taking Enbrel through Health Canada’s Special Access Program. My parents paid out of pocket for this medication - something I will always thank them for because Enbrel changed my life. Within a day I walked without a limp for the first time in years. My interest in improving access to medications was triggered and my father and I began to advocate for Canadian approval of Enbrel. We wrote letters to the federal and Ontario ministers of health, Health Canada, MPs, MPPs and newspapers. Recently, I related my experience in losing access to Bextra before Health Canada’s Cox-2 public forum. The Ottawa Citizen also published my letter about the loss of Bextra and the impact it had on my life.
Since joining CAPA in September 2004, I have been an active member of the Juvenile Idiopathic Arthritis (JIA) committee and currently represent the JIA perspective on the Ontario Biologics Registry. Improving access to healthcare professionals and medications, and in patient education, particularly as it relates to JIA is my beat. I don’t want others to encounter the obstacles to good care that I had to overcome.
Dawn Richards received her PhD in Analytical Chemistry from the University of Alberta (2000), and has applied her analytical expertise to a wide variety of trans-disciplinary genomics and proteomics research efforts. Dawn’s employment experience has included working as a bench scientist in biotech, a project manager at various organizations, and now a business development officer at the Ontario Institute for Cancer Research. Dawn is professionally driven by a keen interest to promote and realize science’s translational potential.
Dawn was diagnosed with rheumatoid arthritis in early 2007. Never one to give in to life’s challenges, she maintains a positive attitude and strives for a healthy work-life balance that includes plenty of exercise and fun. She considers herself extremely fortunate to be in excellent care, to still be able to run long distances and enjoy spinning, and to travel extensively. Dawn strongly believes that constantly seeking life balance along with her efforts to maintain physical and mental fitness have contributed greatly to her successful arthritis management. Dawn considers her strong basic science research background a positive tool to help advance the Canadian Arthritis Patient Alliance and its goals.
I was diagnosed with juvenile arthritis at a very young age. Having to cope with numerous flares and surgeries, I managed to complete various diplomas in both Immunology and Translation, and recently I have started graduate studies. My academic success is a constant source of pride and gives me the strength to reach higher. I have lived through all the stages of my life with Juvenile Arthritis by my side: from being a child with indescribable pain to being a teenager undergoing four joint replacement surgeries and many complications, and being a young woman trying to learn about independence while having a disability. I am active in awareness and advocacy through different organizations for persons with disabilities, including the Quebec association of postsecondary students with disabilities.
As a member of the CAPA steering committee, I am convinced that by sharing my story and talking about the barriers I have had to overcome, I will make a difference in people’s lives. The arthritis community is now central to my daily life. With my involvement at The Arthritis Society, Patient Partners in Arthritis or CAPA, I learn more about myself and my disease, but most importantly I give back to the people who support me and to our society in hopes to advance this cause, my cause, that one day, I will not have to live with an elephant sitting on my shoulders.
Midland, Kings County, New Brunswick
Linda Wilhelm is also on the operations committee of the Best Medicines Coalition, frequently participates in Health Canada expert advisory panels and conferences concerning access and drug safety issues. She is a member of The Expert Advisory Committee for Vigliance of Health Products and a member of the Drug Safety and Effectiveness Network’s steering committee. Linda has been an active advocate for treatment access and quality of care for all patients both regionally and nationally for over ten years and is a past board chair for the New Brunswick Division of the Arthritis Society. Linda has been living with Rheumatoid Arthritis for over twenty five years. She and husband Kerry have been married for over 25 years, have three grown children, one grandson, and live in Midland, Kings County, New Brunswick.