Everyday Health featured an article about Cheryl Koehn, Founder and President of Arthritis Consumer Experts. In the article, Cheryl Koehn shares her story to help others with RA learn from the mistakes she made, such as missed symptoms, diagnosis denial, and treatment delays. Below is an excerpt of the Everyday Health feature:
What Rheumatoid Arthritis Taught an Olympic Volleyball Player
Cheryl Koehn, with Molly, an Australian Labradoodle, started Arthritis Consumer Experts to help improve RA education.
Is denial a common response to a rheumatic disease diagnosis? Cheryl Koehn will be the first person to tell you that she had trouble accepting her diagnosis of rheumatoid arthritis (RA). After all, as a teenager, she was already an elite volleyball player, competing with the U.S. Junior National Team. She earned a four-year scholarship at the University of Washington in Seattle. But by age 27, just a few years after playing a competitive sport at a high level, she needed to sit in the handicapped seat on the bus to get to work. “The toughest part of accepting it,” Koehn says, “was that when I began to look into the disease, I didn’t see anyone like me.”
The Lack of Arthritis Education and Awareness
It was this experience that led Koehn to create Arthritis Consumer Experts, a Vancouver-based organization dedicated to helping those with arthritis to increase their health literacy and to understand what they are facing. “I put off treatment for about a year after my diagnosis,” Koehn says. “If my health literacy were much higher then, I probably would have made different choices.”
Join the “virtual” race to increase public awareness of autoimmune arthritis
May 20 is World Autoimmune Arthritis Day (WAAD). The International Foundation for Autoimmune Arthritis established this commemorative date back in 2012. The virtual event unites dozens of nonprofits, advocates, and experts from around the world to provide educational and awareness information to patients, their supporters, and the general public.
Participants and partner organizations will participate in a virtual global race where they will visit social media and organizational websites and resources. WAAD is hosted on May 20th for the duration of all Time Zones (May 19th 6am EST – May 21st 5am EST). You can participate online on Facebook and Twitter and follow the event’s hashtag #WAAD17. On race day, help Team ACEwin the race and spread awareness:
In honour of Lupus Awareness Month, the Arthritis Broadcast Network is doing a throwback coverage on lupus. The coverage highlights Arthritis Research Canada and Arthritis Consumer Experts’ coverage of the 9th International Congress on Systemic Lupus Erythematous, Vancouver 2010 (“Lupus 2010”). The event was held in Vancouver, British Columbia, Canada in June, 2010. Hundreds of world leading researchers, healthcare professionals, and individuals living with systemic lupus erythematosus (SLE) learned about the current state of the science in SLE and future opportunities in lupus research, education and care.
The objectives of the Lupus 2010 were to: Continue reading
In 2008, a rheumatology workforce analysis report published by the American College of Rheumatology Workforce Study Advisory Group concluded:
Based on assessment of supply and demand under current scenarios, the demand for rheumatologists is expected to exceed supply in the coming decades. Strategies for the profession to adapt to this changing health care landscape include increasing the number of fellows each year, utilizing physician assistants and nurse practitioners in greater numbers, and improving practice efficiency.
Fast forward to 2015
The 2015 ACR/ARHP Workforce Study of Rheumatology Specialists in the United States projects a shortage of 3,845 rheumatologists in the U.S. by 2025, an increase from the 2005 ACR Workforce Study, which projected a shortage of 2,576 rheumatologists. Reasons for the shortage include: Continue reading
Juvenile arthritis strikes up to three in 1000 children in B.C. and is one of the most common chronic diseases among children. Cassie and Friends’ Kids on the Block, an educational puppet troupe, is spreading awareness about juvenile arthritis at elementary schools like the one Sarika Adriaanse attends in Vernon. The aim is to help children understand arthritis. With the aid of a $2,500 grant from Telus’ Community Board, the performance will visit several other interior school boards.
Première salle de cours en ligne en Amérique du Nord conçue pour l’éducation, la responsabilisation et l’obtention d’un diplôme par le patient arthritique d’aujourd’hui
Le comité ACE (Arthritis Consumer Experts) a annoncé aujourd’hui le lancement de son plus récent programme éducatif en ligne pour les patients: Éducation JointHealth™. Conçu pour permettre aux patients de passer du statut « d’étudiants » en matière d’arthrite à celui de « diplômés » à part entière, le programme Éducation JointHealth™ leur permet de se responsabiliser et de s’armer d’outils pour devenir les leaders de leur équipe de soins. Dans le cadre de ce lancement, le comité ACE présente le premier cours du programme, Éducation JointHealth™: La polyarthrite rhumatoïde (PR) – élaboré pour aider les patients et leurs fournisseurs de soins de santé à mieux comprendre leurs motivations respectives et les objectifs du plan de traitement et de soins du patient dans son ensemble.
« Le programme Éducation JointHealth™ a été inspiré et documenté par la participation de notre organisation à un groupe consultatif mondial qui a mené dans 16 pays une enquête sur les patients atteints de polyarthrite rhumatoïde et leurs fournisseurs de soins de santé. Les résultats ont éclairé d’une lumière nouvelle la divergence entre les besoins, les préoccupations et les peurs des patients et la vision de leurs fournisseurs de soins de santé », indique Cheryl Koehn, fondatrice et présidente du comité ACE (Arthritis Consumer Experts) et membre du Groupe consultatif mondial sur la PR.
Principaux constats de l’enquête menée par le Groupe consultatif mondial sur la PR : Continue reading