Cynthia Coney, MEd, CAPP, was the keynote speaker, and spoke as a patient living with lupus, at ACR’s ARHP Keynote Address: Happiness from the Inside Out. Coney is a nationally recognized speaker, trainer, and author. She holds a Master’s Degree in Educational Leadership and is a Master Trainer for the Centers for Disease Control and Prevention (CDC) and The Center for Prevention Workforce Development. Her publications include: Earned Income: A Critical Resource for Sustainable Nonprofit Health Organizations, Intellectual Property for Nonprofit Organizations, and The Wild Woman’s Guide to Living with Chronic Illness.
As a patient who’s been diagnosed with lupus in 1980, she shared her experience as a patient receiving care and support for more than 30 years. She had one advice to offer health professionals, that is: offer empathy, not sympathy.
The National Institute of Health (NIH) has awarded 11 grants (a total of $6 million) to members of the Accelerating Medicines Partnership in Rheumatoid Arthritis and Lupus (AMP RA/Lupus) Network. The alliance includes various private and public research groups across the United States who are committed to advance research on rheumatoid arthritis (RA) and lupus drugs.
AMP RA/Lupus hope to identify and test biologic agents for RA and lupus treatment. Researchers believe that the disease similarities for RA and lupus will allow them to study both diseases at the same time.
When the 24-year-old graced the stage of MUJ 2014, nobody would have guessed she was battling a form of lupus called Systematic Lupus Erythematosus.
Systemic lupus erythematosus (SLE) occurs when the body’s immune system begins to malfunction and attack healthy tissue in various parts of the body, causing inflammation and damage. Tissues affected can include the skin, joints, muscles, kidneys, lungs, heart, blood vessels, and brain.
Zandrea’s introduction to lupus was at an early age, through her mother. Her mother has been living with Discoid Lupus for 23 years.
In 2011, Zandrea’s friends and family encouraged her to join the Miss Jamaica World Beauty Pageant; however, she failed to make the final that year. Determined, she said:
Today, the Spotlight on Arthritis Superheroes is shining on an organization called Lupus Canada.
Lupus Canada is a website that offers resources and information about lupus to people living with lupus, their family and friends, health care professionals and the general public.
Lupus is the name given to a group of chronic immune diseases. It affects about 15,000 Canadians-approximately one in 2000. Lupus Canada wants to ensure that people living with lupus are living well. Like many other forms of arthritis, lupus occurs more commonly in women than in men-women develop lupus approximately ten times more often than men do. While it can strike at any age, it tends to occur most often between the ages of 15 and 45. Continue reading →
The purpose of the study is to develop and maintain a new equation for change in rheumatology. According to the research, early detection + early referrals + early diagnosis + early treatment = better chance to combat unnecessary, irreversible damage and elevate the chances for remission in autoimmune arthritis. The study hopes to address improper identification of early symptoms that may correlate with a delay in diagnosis. Continue reading →
JointHealth™ monthly – May, 2014: Three Women Who “Rock” Arthritis
Women and arthritis are strongly linked: Two out of three living with the disease are women; sixty percent of Canada’s medical students are women, and they will become doctors providing care to women with arthritis; women have led a number of significant advances in clinical arthritis research in Canada.
In this issue of JointHealth™ monthly, Arthritis Consumer Experts (ACE) is proud to profile three women who “rock” the arthritis world. You will find the following interviews:
Dr. Linda Li on arthritis knowledge and exercise in the digital age
Dr. Janis McCaffrey on being a “Doctor Mom” living with lupus
Dr. Julia Alleyne on sports and exercise
This issue’s “Health Happenings” highlights ACE’s latest initiative, Canada’s Best Workplaces for Employees Living with Arthritis competition, and how your company can qualify for this award.
May 10 is World Lupus Day. According to the World Lupus Day website, an estimated 5 million people around the world have lupus – a chronic autoimmune disease that can affect any part of the body (skin, joints, and/or organs inside the body). The best way to help those living with lupus is to help raise worldwide recognition of lupus, to ensure earlier diagnosis, better treatments, and garner more support for people living with lupus.
In Canada, lupus affects about 15,000 Canadians-approximately one in 2000. Continue reading →
PRECISION is a research study aimed at preventing complications from inflammatory skin, joint and bowel conditions. Researchers involved in the study include doctors from the Arthritis Research Centre of Canada, the University of British Columbia, and the Vancouver Coastal Health Research Institute. PRECISION was awarded Canadian Institute of Health Research’s “Team Grant: Health Challenges in Chronic Inflammation Initiative” grant. Continue reading →
Arthritis Broadcast Network’s “CRA Interview Series 2014”: Dr. Janis McCaffrey – Thoughts from a doctor living with lupus
Today’s interview features Dr. Janis McCaffrey, a general practitioner and person living with lupus in B.C. She shares her thoughts on traditional Chinese medicine, acupuncture, social media in health care and immunization. Please note you should always consult your doctor and rheumatologist before starting a new treatment plan.
Consumer “reporters” interviewed more than 30 leading professionals at the Arthritis Broadcast Network Booth (ABN) during last month’s Canadian Rheumatology Association and Arthritis Health Professions annual meetings (CRA). Starting March 14, feature interviews will be posted daily on the ABN YouTube channel at http://bit.ly/ABNYouTube. We invite everyone to share the interviews with their networks to strengthen the public profile of arthritis leaders in Canada.
Ten big drug companies have joined together with the National Institutes of Health (NIH) to accelerate the discovery of new medicines for diseases like alzheimers, diabetes, rheumatoid arthritis and lupus. The project is called the Accelerating Medicines Partnership. Under the five-year agreement, the companies will be sharing scientists, tissue and blood samples, and data. The underlying goal is to help identify targets for new drugs. Continue reading →