Steering Committee

Louise Bergeron

In 1995, following the birth of my second child, I started experiencing low grade fevers, malaise, arthralgias and flu-like symptoms, but it was only in 1999 after experiencing a debilitating flare-up of my symptoms that a very observant General Practitioner referred me to a rheumatologist. The new millennium brought not only a change of century but also a diagnosis of Systemic Lupus Erythmatosus - a disease with a long name and an equally long list of symptoms. Lupus is a fatigue inducing illness that reduces the simplest tasks – things that people take for granted – to a struggle like preparing meals, driving children to activities or socializing with friends. 

I found support at Arthritis West Island Self Help (AWISH) run by a group of people suffering from arthritis who help other people with arthritis take control of their lives. Through the help of others I learned to advocate to get what I needed from the health care system and the legal system.  I have been a board member of AWISH for the last two years.  I am also active with the Quebec Arthritis Society on the Arthritis Patients Rights Committee. I am involved as a patient participant with a 5-year research grant on Early Inflammatory Arthritis being conducted by researchers from McGill University. 

I believe arthritis patients must be involved in bringing the patient perspective to the forefront by making their voices heard.  Government agencies, researchers and the healthcare system need and want to hear what we need to improve our health and quality of life.  How can you get involved?  Ask me.

Susan Borwick

Joint pain and swelling have been a part of my life for as long as I can remember. At age 9 my right knee became swollen and painful. Tests ruled I was RA negative and the issue was dropped even though the problem continued through most of my school years. At age 23 it came back with a vengeance. By this time I was working at Toronto General Hospital as a Medical Laboratory Technologist in Pathology and knew that something was definitely not right. After seeing one specialist without much relief for my symptoms or a definite diagnosis, I came across an article in a fashion magazine about Reiter’s syndrome. That article and a second Rheumatologist saved my life literally and figuratively. Twenty odd years later, I am now classified as having Ankylosing Spondylitis. I have had several knee surgeries, a hip replacement and cataract surgery due to Iritis (a complication of AS).

My involvement with arthritis advocacy up to this point has been a quiet campaign of teaching co-workers and friends about the disease, helping with aquafit and support groups, as well as doing the technical lab work involved in various research projects. I have also participated in several clinical trials of first line drugs. Education of the public, and especially employers, about arthritis and it’s effects on daily living is something I am passionate about.

I am lucky to have access to the drugs and medical experts I need to control my condition but there are many others who are not as lucky. In a country as rich as Canada this should not be happening. As President of CAPA, I will raise awareness of the problems facing Canadians with arthritis and create an atmosphere for change.

Ted McNicol

I was working in Ottawa when I started to suffer from psoriasis; although not a severe case it was a shock since I had been so healthy.  Several years later, I decided to play tennis again but had pains, initially diagnosed as tendonitis. Eventually a diagnosis of psoriatic arthritis was confirmed and my health deteriorated rapidly. Morning pain was a constant and it took till well into the afternoon to be able to walk without a pronounced limp.  I was treated with multiple medications and even spent 10 days in hospital in London, with cortisone shots and rehab.  Bone deterioration continued until I started to lose the ability to bend joints in my fingers.  I was fortunate enough to work in Detroit where biologics had been approved and immediately found relief.  It has been 10 years and I have minimal pain and no further joint damage. I have been able to take up the guitar (sadly the drug cannot confer skill) and lead a relatively active life.  Upon returning to BC, I found it difficult to maintain my medication and still find the cost very high. 

My hope is that I can work on the Steering Committee to help improve access to medication for others, especially new treatments coming online.  Gaining early access to effective treatment is key to ensuring arthritis sufferers can continue to be productive, involved members of society. 

Laurie Proulx

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.

Marie-Eve Veilleux

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.