Cheryl Koehn presented the Qualman-Davies Arthritis Community Leadership Award at the Arthritis Alliance of Canada Annual Meeting, held in Vancouver on Thursday and Friday, October 26 and 27, 2017.
Ms. Louise Bergeron is the recipient of the 2017 Qualman-Davies Arthritis Consumer Community Leadership Award. It is with a great sadness that the award was presented posthumusly. Louise’s son accepted the award at the Arthritis Alliance of Canada Annual Meeting.
Louise was diagnosed with lupus in her late 30’s and began volunteering in various arthritis-related patient groups.
Louise also offered volunteer service to various research networks in under-served groups, including representing the perspective of people living with systemic autoimmune rheumatic diseases, which included involvement in the Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNIOS) and Lupus Canada. In her work with Dr. Paul Fortin, she co-developed “MyLupusGuide”, a web platform dedicated to informing persons with lupus and promoting their self-care. Louise was highly involved as a consumer with CIHR as a peer reviewer and participated in numerous research projects either as a collaborator or as a subject matter expert. She also contributed in the writing and publishing of many reports on consumer involvement in arthritis research.
Louise was a valued mentor to patients helping them become advocates for themselves and to the broader Canadian arthritis community. In 2013, Louise was awarded a Queen’s Diamond Jubilee Medal for her outstanding volunteer work on behalf of the arthritis community.
Osteoarthritis and osteoporosis are different diseases but often there is confusion between these two diseases. This is especially true among older adults. Research by Burgener et al. suggests that although many older adults have heard of osteoporosis, many know very little about it. This is important as having a good understanding of osteoporosis helps to prevent and treat the disease. Below is a chart highlighting the differences between osteoporosis and osteoarthritis.
(bone+joint pain=joint damage)
What is it?
thin fragile bones that can break easily
bone mass loss can occur without any symptoms
often a fracture is the first symptom OP is present. Typical fracture locations are the wrist, spine and the hip
a frequent cause of height loss and acquired spine curve ‘dowager’s lump’
early detection is important to prevent OP
a loss of cartilage in the joint, extra bone formation and reduced joint movement
most common form of arthritis
typical symptoms are pain, loss of movement, and stiffness
common joints affected: hands, base of thumbs, tips and middle joints of the fingers, neck, back hips, knees, feet, first toes (bunion) or spine
does not affect other organs
Who gets it?
1.4 million Canadians have OP
1 in 4 women over the age of 50
1 in 8 men over the age of 50
however, the disease can strike at any age
2.9 million Canadians have OA
women more than men (2 out of 3 women)
hip and knee OA usually occurs after age 50
affects 30% of people over age 75 but is not simply apart of getting old
genetic factors and obesity
Who is at risk?
fracture with minimal trauma after the age of 40
small and thin body frames
anyone with rheumatoid arthritis speeds up the rate of OP
family history of OP
some medications including heparin (blood thinner), anti-seizure drugs and long term use of corticosteroids (such as Prednisone)
links to persons with obesity, diabetes and cartilage disorders
occupational trauma over time
Things that increase your risk.
loss of menstrual cycle in young women
lack of vitamin D and calcium
chronic diseases like rheumatoid arthritis and Hepatitis C
excessive intake of alcohol and caffeine
lack of exercise
being Caucasian or Asian
obesity increases risk of OA of the hand 3 times
a weight gain of 10kg (22 lb) almost doubles one’s risk of OA of the knee
Below is a infographic on the Global Impact of Osteoporosis from Cigna.
Living well with osteoporosis in Canada
It is normal to feel anxious when first diagnosed with osteoporosis. Some patients are concerned they may break their bones again (or fracture a second time if a broken bone was part of the initial diagnosis). As a result, some may stop participating in social and physical activities. This can lead to feelings of loneliness, depression and helplessness. It is important to know that you are not alone. With the help of medications, your health care team, and lifestyle changes, and others living with osteoporosis, you can reduce your risk of fracture and, in some cases, improve bone mass.
Osteoporosis Canada provides helpful resources on how to manage osteoporosis. They also operate a toll-free information line (English: 1-800-463-6842/French: 1-800-977-1778). Information counsellors discuss your concerns, send appropriate information and, if there is one, refer you to a Chapter or support group near you. To learn more about living well with osteoporosis, please click here. To learn more about osteoarthritis, please click here.
Arthritis Consumer Experts leads formation of world’s first international network of RA patient organizations.
ACE has helped lead the formation of the world’s first international network of RA patient organizations. Founded in 2016 by RA patient organizations and leaders from 18 countries, the Global RA Network builds international relationships and identifies and works on common goals and initiatives to improve the lives of people living with RA around the world.
The Global RA Network today launched its website – http://globalranetwork.org/– that represents an on-line meeting ground and a place to share its ongoing work and educational and informational resources with RA patients, care providers and governments.
The Global RA Network’s first initiative was to conduct a survey on patient experiences of RA models of care. The survey findings will be presented at the upcoming American College of Rheumatology Annual Scientific Meeting on November 5, 2017.
Based on survey findings, the Global RA Network will develop education, information and advocacy initiatives to improve RA patients’ understanding about the kind and quality of care they should be receiving to enable the best outcomes possible in member countries.
Arthritis community leaders launch new patient portal to improve patient care in BC
ArthritisBC+Me Portal helps BC patients learn about arthritis programs and resources
A group of BC’s leading arthritis specialists, researchers and patient groups are pleased to announce the launch of the ArthritisBC+Me portal designed to help BC patients learn about arthritis and local programs best suited to their needs. The first of its kind in Canada, the portal represents the commitment of the community partners – Arthritis Consumer Experts, Arthritis Research Canada, Mary Pack Arthritis Program, The Arthritis Society and the BC Society of Rheumatologists – to making arthritis information and services more accessible to the estimated 1 in 5 British Columbians who are living with arthritis. Continue reading →
Getting “Patient Satisfaction” from Arthritis Health Care
To celebrate Arthritis Awareness Month in Canada, in this issue of JointHealth™ insight, we highlight three international surveys that have helped identify gaps in arthritis models of care from the patient perspective. We want to know what you think. Please complete the three mini surveys in this month’s JointHealth™ insight. Your responses will help drive our 2018 information and education programs to support patients and improve the way health care is delivered by the rheumatologists, allied health professionals, health policy decision makers and others who provide care to Canadians with all types of arthritis.
In this issue, you will also:
Read about the model of care for rheumatoid arthritis
Find a Letter to the Editor template to increase awareness about arthritis in your community
Arthritis Consumer Experts (ACE) is celebrating Arthritis Awareness Month with the #ArthritisMadLibs Twitter Project. The goal is to help others understand the impact of arthritis and make informed decisions about the development of new arthritis programs that will benefit patients and their caregivers.
#ArthritisMadLibs is a chance to re-write the arthritis patient story during Arthritis Awareness Month – one word at a time. On the Labour Day long weekend, the #ArthritisMadLibs hashtag garnered 329.892K impressions, 135 Tweets, 24 participants – averaging 2 Tweets per hour and 6 Tweets per participant.
Since September 1, #ArthritisMadLibs had 910.103K impressions, 379 Tweets, 46 participants – averaging 1 Tweet per hour and 8 Tweets per participant. We thank the patients, health care professionals, patient groups, and researchers who have engaged with us thus far. Our engagement rate on @ACEJointHealth’s Twitter account is at an impressive rate of 2.8% engagement rate (34 link clicks, 179 retweets, 235 likes, 138 replies) – a significantly high engagement rate compared to the average Twitter engagement rate of .7% for the top 25 brands on Twitter. Social media is a tricky business and who you follow, who you have following you, and how many followers you have can affect these statistics but for a grassroot patient organization, we are pretty proud of the #ArthritisMadLibs and its participants and supporters!
Here is a summary of the #ArthritisMadLibs (thus far) and some of our favourite Twitter moments: