All posts related to "spondyloarthritis"

Arthritis Consumer Experts introduces their newest JointHealth™ Education course

JointHealth™ Education: Advanced Therapies for Inflammatory Arthritis 

JointHealth™ Education Advanced Therapies bannerArthritis Consumer Experts (ACE) is excited to announce the launch of its newest on-line patient education course: JointHealth™ Education Advanced Therapies for Inflammatory Arthritis. This three-lesson course is designed to help patients living with inflammatory arthritis identify when is the appropriate time to transition from conventional synthetic disease modifying medications (csDMARDs) to an advanced therapy, such as a targeted synthetic DMARD or biologic DMARD, and what key questions to ask about how they are taken and how they work in the body.

“JointHealth™ Education was inspired by many of ACE’s members living with an inflammatory arthritis who have told us they lack the knowledge and communications skills to have full, satisfying conversations with their rheumatologists on topics such as treatment options during their appointments. We want to ensure patients have the tools to understand when they need to start thinking about a therapy change. Patients like me often wait too long to make treatment plan adjustments, such as moving to an advanced therapy,” said Cheryl Koehn, Founder and President of Arthritis Consumer Experts.

“Canadian rheumatologists have been actively discussing and pursuing ways to improve communication between patients and rheumatologists in order to work together to set treatment goals and establish a treatment plan to achieve the best possible disease outcomes. JointHealth™ Education Advanced Therapies is a great course not just for patients, but also for rheumatologists – junior and senior, alike. We need to see our patient’s experiences, needs and goals through their eyes and words,” said Kam Shojania, MD, FRCPC, Clinical Professor and Head, Division of Rheumatology, University of British Columbia, and Medical Director of the Mary Pack Arthritis Program.

The JointHealth™ Education program provides current, evidence-informed lessons, quizzes and coaching videos through a secure, on-line classroom where “students” can learn from the comfort of their own home or over the work day lunch hour. The program helps prepare patients to appropriately frame their health concerns and questions with their health care provider. Upon successful completion of a course the patient “Graduate” receives a certificate indicating they have the knowledge and communication tips needed to successfully prepare for their medical visit, talk to their healthcare provider about setting treatment goals and making an overall plan, discuss specific treatments to manage and monitor their type of arthritis.

Did you know that ankylosing spondylitis affects up to 1 in 200 people?

Picture of spine and hip areaAnkylosing spondylitis (AS) is one of the most common types of inflammatory arthritis. It is estimated to affect up to 1 in 200 people.

Ankylosing spondylitis primarily affects the spine, but can also involve the hips, knees, shoulders, and rib cage. The most common symptom of AS is long-term back pain, along with spinal stiffness in the morning or after a long period of rest (this is the main reason why AS is often mis-diagnosed as ordinary “low back pain”).

Unlike in many other forms of arthritis where women are most affected, three out of four people diagnosed with ankylosing spondylitis are men. It tends to strike in the prime of life; while it can strike at any age, it is most common in people between ages 15 and 40. While it has no known cure, it is treatable; with the proper care, people who are diagnosed with AS can lead full, productive lives.

Diagnosis of ankylosing spondylitis

Continue reading

JointHealth™ insight – April 2018: What’s new in the science of arthritis?

title page for JHI April #CRArthritisIn Arthritis Consumer Experts’ (ACE) April JointHealth™ insight, we explore what “personalized and precision medicine” – the theme to this year’s Canadian Rheumatology Association Annual Meeting and Arthritis Health Professions Association Annual Meeting – means to arthritis patients and health care providers. To help you, we have prepared a curated guide to a selection of #CRArthritis interviews, outlining key points covered during the event.

Among the topics of interest to patients, the interviews provide information on:

  • Personalized and precision medicine
  • Juvenile arthritis
  • Spondyloarthritis and psoriatic arthritis – Advancements in diagnosis and therapy
  • Giant cell arteritis and vasculitis
  • Exercise as medicine
  • Nutrition
  • Pregnancy
  • Medication adherence
  • Medical marijuana and pain management
  • Improving access to and quality of arthritis care
  • New research on preventing rheumatoid arthritis
  • Communicating with your doctor
  • Teamwork and patient-centred care in arthritis Models of Care
All interviews can be accessed through YouTube, Twitter, and Facebook.
  

To turn on French subtitles, please adjust the YouTube settings for each interview.

April 21: Spondyloarthritis Information Session – Live stream or in-person in Halifax

The Canadian Spondylitis Association will be hosting a Spondyloarthritis Information Session tomorrow in Halifax!

You can join in-person in Halifax or on the live stream tomorrow morning from the comfort of your home from anywhere!

A picture of the Halifax Central Library where Spondyloarthritis info session will happenIf you are attending in person, the event will take place in the BMO Community Room on the second floor of the Halifax Central Library on Spring Garden Road. Registration starts at 9:15 am.

The live stream of the event will start at approximately 9:30 am AST/8:30 am EST/5:30 am PST. To join online, click the following link: http://www.spondylitis.ca/the-latest/live-event/ 

In case you are unable to access the link above, please try: https://livestream.com/45north/events/8157608

To ensure a smooth live streaming experience, make sure you have a strong internet connection or cellular network if you are participating from your mobile devices. To ask questions during the event, email questions@spondylitis.ca

Please ensure your volume is adjusted appropriately to hear the broadcast.

Complete this short “Co-Morbidity Survey” to stand-up to spondyloarthritis!

Please take a few minutes to complete a short survey to help the Canadian Spondylitis Association help you. 

Picture of a spine for the co-morbidity spondyloarthritis surveyA co-morbidity is not a side effect.

A focus of the Canadian Spondylitis Association (CSA) in 2018 will be on highlighting and educating members about co-morbidities that are associated with spondyloarthritis. The CSA are forming partnerships to bring you the education and support that you should have. Individuals are sometimes diagnosed because of a co-morbidity or by a professional outside of rheumatology. In some cases, diagnosis is delayed due to the complexities of spondyloarthritis and its many co-morbidities.

Stand-up to spondyloarthritis! Together we can make a difference. Please take a few minutes of your time to complete a short survey to help the CSA help you.

The CSA will be updating their website with information on co-morbidities and include articles in upcoming newsletters highlighting a co-morbidity.

Complétez ce court sondage pour tenir tête à la spondylarthrite!

S’il vous plaît, prenez quelques minutes afin de complétez ce court sondage pour aider l’Association Canadienne de Spondylarthrite à vous aider! 

Picture of a spine for the co-morbidity spondyloarthritis surveyUne co-morbidité n’est pas un effet secondaire.

En 2018, l’ACS mettra l’accent sur la sensibilisation et l’éducation des membres sur les co-morbidités associées à la spondylarthrite. Nous formons des partenariats pour vous apporter l’éducation et le soutien dont vous avez besoin. Les individus sont parfois diagnostiqués à cause d’une co-morbidité ou par un professionnel de la santé autre que la rhumatologie. Dans certains cas, le diagnostic est retardé en raison de la complexité de la spondylarthrite et de ses nombreuses co-morbidités.

Tenez tête à la spondylarthrite! Ensemble nous pouvons faire la différence. Veuillez prendre quelques minutes de votre temps pour remplir un court sondagepour nous aider – à vous aider.

Nous mettrons à jour notre site Web avec des informations sur les co-morbidités et incluant des articles, dans les prochains bulletins d’informations mettant en évidence une co-morbidité.

EULAR update: Talking ’bout a therapy evolution (spondyloarthritis)

EULAR BannerFrom this year’s EULAR annual conference comes major news for people living with spondyloarthritis (SpA). Based on recommendations from a task force of European and North American patients, rheumatologists, dermatologists, and health professionals, new treat-to-target (T2T) guidelines for SpA were announced that emphasize the importance to set a target in shared decision making between a specialist and patient and carefully monitor the disease in order to improve a patient’s health outcome.

“The T2T recommendations are following the principle that you have to define a target you want to reach and adapt management to reach this target. This is independent of the treatment you use to reach the target,” said Professor Desiree van der Hejde, a professor at Leiden University Medical Centre in the Netherlands. Continue reading

Register now for the 2016 Spondyloarthritis Patient Forum

This forum will help patients with ankylosing spondylitis and psoriatic arthritis and their family. Register now for free!
Forum bannerThe Spondyloarthritis Research Consortium of Canada and the Canadian Spondylitis Association, in collaboration with The Arthritis Society, would like to invite you to register for free to the 2016 Spondyloarthritis Patient Forum. The forum aims to help patients living with ankylosing spondylitis (AS) and psoriatic arthritis (PsA) and their family. Light refreshments will be provided.

Here are the event details:

Date: Saturday, April 30, 2016
Location: Sheraton Vancouver Wall Centre, Junior Ballroom CD
1088 Burrard Street, Vancouver
Time: 3:30pm-7:00pm
Cost: Free

Please note pre-registration is required. Seats are limited. You can register: Continue reading

AS Health Storylines: An app for your AS journey

Screen grab image of appAS Health Storylines is a self-care app for ankylosing spondylitis (AS) and associated spondyloarthritis diseases. It is developed in partnership with the Canadian Spondylitis Association, and is powered by the Health Storylines™ platform from Self Care Catalysts Inc. The Canadian Spondylitis Association is a national association to advocate for and support those living with ankylosing spondylitis, psoriatic arthritis, and associated spondyloarthritis diseases.

This app is created with input from people with AS so that the right health tools are available to you. The app allows you to record your symptoms, fatigue levels, moods, and more. Choose what you want to track to build your own summary – “My Storylines” –  to learn more about your health, and to share – safely and securely – with your doctor about what happened between visits.

The following health tools in the app will help you better manage and monitor your AS or associated spondyloarthritis disease: Continue reading

CRA Interview Series 2015 – Mr. Michael Mallison: Thoughts from the CSA

Canadian Rheumatology Association (CRA) and Allied Health Professions Association (AHPA) Interview Series 2015

Today’s feature interview – Mr. Michael Mallison: Thoughts from the Canadian Spondylitis Association (CSA)

ABN reporters from Canada’s arthritis consumer organizations interviewed leading health professionals and researchers during last month’s CRA and AHPA annual meetings.

Beginning March 9, feature interviews will be posted on the ABN YouTube channel http://bit.ly/ABNYouTube. Please help us raise awareness about the important work going on in Canada by sharing the interviews with your organizational and social networks.

About Mr. Michael Mallison

Michael MallisonMichael was diagnosed with Ankylosing Spondylitis ten years after onset. Looking for support, he joined the Ontario Spondylitis Association, becoming its Fundraising Chair and then President. Michael was elected the first President of the Canadian Spondylitis Association in 2007 and continues to fill that role. Continue reading