Being diagnosed with arthritis is tough, but the main challenge come when you try to get your friends to understand your arthritis. In an interview with the Arthritis Foundation, Mark Lumley, PhD, professor and director of clinical psychology training at Wayne State University in Detroit, Michigan, offers the following tips: Continue reading
Join us at an interactive public forum hosted by the Arthritis Patient Advisory Board of Arthritis Research Canada.
What do a rheumatologist, an orthopaedic surgeon, a clinical bio- mechanist, a clinical health researcher and an arthritis patient/consumer advocate have in common? They are all osteoarthritis (OA) experts, who will speak at ROAR 2015.
What do people with OA want to know? We are honoured to have six speakers share their research with us, guided by topics that represent the patient voice.
What is ROAR?
Dear ACE community members,
I’ve had rheumatoid arthritis for over a quarter century now, and I’m sick of it.
Canadians living with one of over 100 types of arthritis are told to understand that what they have is “just arthritis.” They are frustrated by the self-management routine they are supposed to be “in charge of” because they don’t have access to the very things they are supposed to self-manage with. They’re discouraged to read about other important diseases in the media spotlight, but not their own. They’re saddened that yet another Arthritis Month in Canada has begun without a cure for any type of arthritis. That’s how I feel, too. What about you?
Our community continues to face significant barriers to elevating arthritis with the public, governments and workplaces across the country where the havoc wreaked by the diseases is still underestimated and poorly understood.
Well, I’ve had enough. We can’t passively accept arthritis. It maims and kills, but people seem afraid to say that. I’m going to start saying it in my life and in my work.
I am rheumatoid arthritis. Who are you?
We need to break through the sound barrier. Please take a moment and tell me, tell your arthritis sisters and brothers, who you are. I want to know. Make millions know.
May 20 is World Autoimmune Arthritis Day. The International Foundation for Autoimmune Arthritis established this commemorative date back in 2012. The virtual event unites dozen of nonprofits, advocates, and experts from around the world to provide educational and awareness information to patients, their supporters, and the general public.
In the past, the event was organized as an online convention. This year, participants and partner organizations will participate in a virtual global race where they will visit social media and organizational websites, join live “detours” (webinars and web chats), and access community resource and raise awareness for autoimmune arthritis. During the Call to Action LIVE Awareness “Crowd Rallies” program, participants can join the Autoimmune Sing-a-Long Detour or submit a video contest on the topic of “raising your glass to raise awareness about autoimmune arthritis. Continue reading
Canadian Rheumatology Association (CRA) and Allied Health Professions Association (AHPA) Interview Series 2015
Today’s feature interview – Linda Wilhelm on the Arthritis Patient Charter
ABN reporters from Canada’s arthritis consumer organizations interviewed leading health professionals and researchers during last month’s CRA and AHPA annual meetings.
Beginning March 9, feature interviews will be posted on the ABN YouTube channel http://bit.ly/ABNYouTube. Please help us raise awareness about the important work going on in Canada by sharing the interviews with your organizational and social networks.
About Linda Wilhelm
Linda Wilhelm is a mother, a grandmother, and an arthritis advocate who has lived with rheumatoid arthritis for over 30 years. Her advocacy work includes the following:
- Atlantic Canada representative and Co-chair for the Consumer Advisory Council.
- Operations committee member of the Best Medicines Coalition.
- Frequent participation on Health Canada’s advisory panels and conferences on access and drug safety.
- Two term member of The Expert Advisory Committee for Vigilance of Health Products.
- Member of the Drug Safety and Effectiveness Network’s steering committee.
- Active advocate for treatment access and quality of care both regionally and nationally.
- Past board chair for the New Brunswick Division of The Arthritis Society.
- President of the Canadian Arthritis Patient Alliance.
In their Fall issue, The Open Journal of Occupational Therapy featured an article titled “Occupation and the Artist: Sculpting the Illness Experience” on a person that is a favourite in the arthritis and art community – Otto Kamensek. In the article, Otto shares what his exhibit “Glimmer of Hope” means to him.
“Glimmer of Hope” is a visual journal of the pain Otto has experienced throughout his life with Juvenile Rheumatoid Arthritis (JRA). It illustrates the changes and sensations that have occurred in his body. Throughout his work, he uses symbolism to represent the types of pain he experiences and where it occurs in his joints. Lightning bolts represent flashes of pain, needles represent sharp pain, melted down nails represent festering pain, and elongated pyramids represent monumental pain. His sculpture also depicts scars from hip and knee replacements, muscle wasting, and physical changes in the feet and hands.