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.
Today, the Spotlight on Arthritis Superheroes is shining on Zandrea Bailey, sixth finisher in the Miss Universe Jamaica (MUJ) 2014 pageant.
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.
Early Symptoms of Autoimmune Arthritis: A Patient-Centered Research Study
Participate in this study to help develop and maintain a new equation for change in rheumatology
The International Foundation for Autoimmune Arthritis (IFAA), with the help of the Spondylitis Association of America, Lupus UK, Sjögren’s Syndrome Foundation, and the International Still’s Disease Foundation, have created a study called the “Early Symptoms of Autoimmune Arthritis: A Patient-Centered Research Study”.
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.
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.