Spread the Word – It’s Arthritis Awareness Month!

We’re half way through Arthritis Awareness Month and it’s not too late to spread the word about arthritis and the impact it has on the lives of the 4.6 million Canadians living with the siease. Rheumatoid Arthritis, Systemic Lupus Erythmatosus and Ankylosing Spondylitis impact people in the prime of their lives and the impact extends to the patient’s family. It also affects the ability to participate in all aspects of life, such as work and relationships. Remind people that it isn’t a disease of the old and affects children too.

 

The Invisibility of Pain

The opioid crisis has been the subject of a lot publicity. Both the Ontario and federal governments have developed a plan of action to address the issue. But have they heard enough about the responsible use of opioids by chronic pain patients? Read this guest article by arthritis blogger and advocate, Lene Anderson, to learn more… 

Grieving the Loss of Louise Bergeron

It is with a heavy heart that we learned that Louise Bergeron died suddenly in mid-August. Louise made many positive contributions to the arthritis community and is former CAPA President and Board Member. In remembrance of her dedicated efforts and accomplishments, we have written this homage for our dear friend and patient advocate. 

Get Involved!

 

World Arthritis Day –  The World Arthritis Day is an effort to increase awareness of the importance of early diagnosis and treatment for arthritis. Join us on Twitter and Facebook on October 12th to promote awareness of rheumatic diseases!

Sign the Petition: Canakinumab Therapy for Systemic Juvenile Idiopathic Arthritis (SJIA) – Canakinumab is a biologic approved for use in children with SJIA. Although it has been recommended for reimbursement by CADTH, the BC government has decided not to list this medication. A key benefit of this medication is that it only needs to be injected once per month and it provides another treatment option for patients. Sign the petition to convince the B.C. government to list this drug!

What have we been up to?

 

Missing the Patient Voice in Federal Opioids strategy – CAPA has been active in ensuring the patient voice is heard in the development of a Federal Opioids Strategy. We sent a letter to the federal Minister of Health last year to highlight that there wasn’t sufficient patient representation at the Pain Summit. We also took the opportunity to provide our input regarding new Health Canada measures to inform Canadians of the risks of prescription opioids.

Real People Contributing to Real Research – CAPA Board Member, Annette McKinnon, was the topic of an article in a Canadian Institutes for Health Research publication for her dedicated effort to ensure patient involvement in research. Thank you for your dedication and keep up the great work!

Interview for Pregnancy & Parenting Resource – CAPA 2nd Vice-President, Laurie Proulx, spoke with U.S. based patient advocate, Mariah Zebrowski Leach concerning the CAPA pregnancy and parenting resource. Read the article about the resource and Laurie’s presentation at the EULAR Congress in June.

Presentation to Knowledge Translation (KT) Canada Summer Institute – CAPA President, Linda Wilhelm, spoke about patient engagement in research to a group of trainees, or students doing post-graduate studies in health research. Learn more by reading Linda’s presentation on our website.

Parenting with Disabilities – CAPA has collaborated with a number of researchers including Lesley Tarasoff, who is researching pregnancy and parenting issues for people with disabilities. Read this article in Today’s Parent about her research and the stigma faced by people with disabilities.

Stay Informed!

 

Sjogren’s Syndrome Cross-Country Webinar – Sjogren’s Syndrome is a disorder of the immune system and affects many people living with rheumatoid arthritis and lupus. Learn more about the disease and how to ease its symptoms by registering for this webinar. Stay informed by listening to presentations by a leading rheumatologist, opthamologist, dentist and psychotherapist!

OHIP Enhancements for Youth & Children – Starting on January 1, 2018, anyone 24 years of age or younger will be able to get prescription medications for free through the Ontario Health Insurance Plan (OHIP). Learn more about the changes, including who and what medications will be covered.

Raising Awareness about Ankylosing Spondylitis – The President of theCanadian Spondylitis Association, Gerald Major, was interviewed for a University Health Network (UHN) article about the disease and the management and evolution in treatments. Beyond the physical issues with the disease, Gerald notes that the disease took a psychological toll. Read the article here…  

Cool technology for youth with long-term health challenges – The transition from pediatric to adult care is not an easy one for young people with chronic illness. A new app called Koolio is available to support young people during this transition and includes a Mood Line and Mood Map, calendar for medical appointments and checklists. Download the app now in the Apple Store and Google Play.

Website, Facebook, Twitter & YouTube – Our website, Facebook pageTwitter account and YouTube channel are updated regularly with new information. Don’t forget to follow us on Facebook, Twitter and YouTube to keep up to date on the latest arthritis and advocacy information!