Picture from North Shore News: http://www.nsnews.com/lifestyle/deep-cove-teen-has-cautionary-health-tale-1.23127827
Deep Cove resident Senya Kyle has lived with chronic pain from systemic juvenile idiopathic arthritis (sJIA) since she was a little girl. Senya is now a Grade 10 student at Seycove secondary. Instead of playing soccer and hiking Quarry Rock with her friends and participating in other school activities, she watches from the sidelines. After school, she can’t even join her friends for a walk around the mall.
Due to her sJIA, Senya has fused vertebrae in her neck, along with serious joint damage in her feet. As of yesterday, the number of ankle surgery Senya has gone through is four. According to Senya, every step she takes is a dull ache mixed with stabbing pain in her ankle. Sometimes, her pain is so unbearable that she cannot move. She is forced to live a sedentary life at the young age of 15. In an interview with North Shore News, Senya says: “That’s pretty much all I can do, is sit down and hope that (the pain) will go away.” At her worst, Senya had 40 joints inflamed at one time.
As we say goodbye to 2017, we can reflect on a year where in media coverage, in workplaces, and in our daily conversations, there was much focus on issues that threatened to divide us. The arthritis community in Canada has also faced issues that have challenged us to re-examine our beliefs and principles on how to best serve people living with arthritis.
As I look back over the past 12 months I think of the people with arthritis we have met or engaged with face-to-face and on-line, many of who still face barriers to accessing arthritis trained specialists, public and private health insurance reimbursement for needed medications, emotional and psychological support, income assistance or workplace supports. It’s hard in the world of chronic diseases such as arthritis – marked by pain, disability and individual and family struggle – to see the positive. But I must. I know no other way of living my own life with rheumatoid arthritis (RA) and osteoarthritis (OA) than to try to think positively about my own situation and those our organization serves. Continue reading →
Cheryl Koehn appointed to the CIHR’s Standing Committee on Ethics
The Canadian Institutes of Health has appointed ACE’s Founder and President, Cheryl Koehn, to a three-year term on the Standing Committee on Ethics for the agency. The committee reports to the Governing Council on emerging ethical issues of strategic relevance to health and health research. It provides the Governing Council with high-level strategic advice on the ethical, legal and socio-cultural dimensions of the Canadian Institutes of Health Research’s mandate as set out by federal statute. The committee can act on its own initiative to advise the Governing Council or at the request of the President of the Canadian Institutes of Health Research.
The committee includes the Chief of Bioethics for UNESCO, a representative of industry, seven university faculty, and now a person living with arthritis.
Do you have moderate to severe plaque psoriasis? We need your valuable input.
The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for brodalumab for moderate to severe plaque psoriasis.
The CDR is part of the Canadian Agency for Drugs and Technologies in Health (CADTH). The CDR conducts objective, rigorous reviews of the clinical and cost effectiveness of drugs, and provides formulary listing recommendations to the publicly funded drug plans in Canada (except Quebec).
To help them make their recommendations, the CDR accepts input from patient organizations and groups, like Arthritis Consumer Experts (ACE). Because patient input is vitally important to government decision-making about medications, we would like to gather your views and share them with the CDR.
I was recently at a meeting when a prominent doctor (from another disease area) told me that working with the arthritis community and government to improve models of care for people with arthritis was a “pipe dream”. His comment was in response to a presentation I had just given to about 50 clinical and research specialist physicians. At first, I was taken aback by his comment as I stood at the podium. Thankfully, I knew where I and Arthritis Consumer Experts (ACE) had come from over the last 18 years. We’ve been on a journey to change and save lives by volunteering and working directly with fellow patients and their families, medical and research experts and policy makers. That journey hasn’t been easy; quite the contrary. For the first five years of ACE’s existence, powerful people and organizations wanted us to “go away”. Why? Well, we upset the status quo by bringing to the forefront the experience and voices of patients – real people living with real arthritis – and by refusing to be discouraged and pushed away.
I’m telling you, our valued members, subscribers, fans and followers, this, because I want you to know that 18 years later, we’re going to keep doing what we’ve always done, and more, and we want you to continue to be a part of the journey. You are ACE. You are the experience, the pain, the struggle, the wins, the joy, the challenges we represent. We are family. Brothers and sisters in arthritis, every day, all day.
We started with one person, me. Today, we are the largest arthritis patient organization in Canada with 40,000 members and subscribers across the country. Our membership base is largest in Ontario, Quebec, British Columbia and Alberta, but we have “ACE-ers” in every single province and territory. Whether you live on the West or East coast or in Centre, what we hear from you is the consistent:
At the 2017 American College of Rheumatology’s (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Meeting, ACE presented a poster on a global survey – “Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey” – conducted by the Global RA Network – made up of ACE and 20 other patient advocacy groups – designed to gather insights on RA models of care from the patient perspective, as well as probing their knowledge about the disease and available treatments.
The survey revealed the urgent need to improve RA models of care at every stage of the disease awareness, treatment and care journey. One of the key findings was the need for more information and education on rheumatoid arthritis for patients and the public is needed to support people with the disease. Specifically, to help them best describe their symptoms and help them take shared decisions with their rheumatologists.
At the ACR annual meeting, a panel on bridging global gaps in arthritis care looked specifically at ways to improve care for patients living in underserved areas.
Global RA Network present results of international survey of the rheumatoid arthritis patient care experience at ACR / ARHP Annual Meeting
The Global RA Network, founded by patient-led national arthritis organizations from 21 countries, presented the results of a global survey – “Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey”1 – investigating patient-reported experiences of rheumatoid arthritis models of care at the American College of Rheumatology’s (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Meeting.
At an ACR poster session on November 5, 2017, Cheryl Koehn, lead author of the abstract and President of Arthritis Consumer Experts, Canada’s largest patient-led arthritis organization, said: “The survey highlights the difference between best practice RA models of care and the patient’s lived experience of managing a life-long condition like RA. The survey will also advance collaboration between the RA patient organizations involved in the Global RA Network. By analyzing and interpreting the survey results for each participating country, the Global RA Network can develop education and information initiatives to raise awareness of symptoms and ensure RA patients receive the best possible care.”
The first crowd-sourced research of its kind designed by RA patients, for patients, to better learn what their care experiences are like in the their country, the global survey fielded responses from 2,690 respondents from 14 countries in Europe, the Middle East, and North and South America. The survey highlights self-reported gaps and delays in all five key elements of a standardized RA models of care, including significant delays to diagnosis and specialist access globally, delayed therapy effectiveness assessment, and additional education/information to increase the level of confidence to describe RA and improve effective self-care practice.
ACE presenting abstract at American College of Rheumatology (ACR) Annual Meeting
Cheryl Koehn will be presenting Poster 353 on Sunday, November 5 between 9 am-11 am: Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey
The 81st American College of Rheumatology (ACR) Annual Meeting being held November 3-8 in San Diego is the world’s premiere meeting of over 12,500 rheumatologists and rheumatology health professionals, sharing the latest arthritis advances and research.
Arthritis Consumer Experts (ACE) is excited to announce that Cheryl Koehn, Founder and President of ACE, will be presenting Poster 353: Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey on Sunday, November 5 from 9am-11am at Poster Hall C. We encourage you to attend the presentation. Cheryl, as lead author of the abstract, will be discussing the results of a first ever global survey, by patients, for patients, examining what patients’ RA models of care experiences are like in their country.
The survey was conducted by the Global RA Network, founded in 2016 by RA patient organizations and leaders from 21 countries to build international relationships and work on common goals and initiatives to improve the lives of people living with RA around the world.
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.