Living your best life with arthritis.

SickKids’ annual prom night gives patients the experience of a lifetime

Picture of two teens from SickKids Great Gatsby-themed prom

Picture taken from the @SickKidsToronto Instagram account

 

On Friday, patients at the Hospital for Sick Children in Toronto attended a Great Gatsby-themed prom. For many, this was a second chance at a fairy-tale and to experience what they may have missed at their own school.

This year’s prom marks the hospital’s eighth year of hosting this event. Both in-patient and out-patient teens who missed their own school proms due to illness or treatment are invited. For one night, they can forget about their illness and be a normal teenager. The event connects patients to other people who can understand what they’re going through.

In an interview with CTV News Channel Friday, Vanessa Williams, who gets treatment at SickKids for anxiety issues, said: “The SickKids prom allows kids to interact with each other and make new friends and make connections as well. Williams is also a member of the children’s council who helped to plan this year’s prom.

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The Big Sick film highlights writer’s real-life battle with adult-onset Still’s disease

The Big Sick film highlights writer’s real-life battle with adult-onset Still’s disease. The Big Sick film is based on the real-life courtship between Silicon Valley actor Kumail Nanjiani and his wife, writer Emily V. Gordon. In the movie, Zoe Kazan portrays Gordon onscreen, and Holly Hunter and Ray Romano play her parents.

The Big Sick film cast will cast light on adult-onset Still's disease

The romantic dramedy portrays how the married co-writers dealt with the extremely rare form of arthritis that brought them together 10 years ago. Back then, Gordon was a therapist in Chicago and has been together with the then standup comedian Nanjiani. Gordon’s initial symptoms were similar to a cold. She thought she had a really bad cold or pneumonia. She fainted in the middle of getting an X-ray and was rushed to the emergency room.

Gordon was eventually diagnosed with adult-onset Still’s disease (AOSD), a rare form of arthritis that can shut down major organs if untreated. Adult Still’s disease is characterized by high fevers, inflammation of the joints, and a salmon-coloured rash on the skin. It can either be chronic or episodic (having flare-ups a few times a year). In children, this disease is known as systemic onset juvenile rheumatoid arthritis; when it occurs in people over age 15, it is known as adult Still’s disease. In Gordon’s case, AOSD affected her lungs, causing water to accumulate in her lungs. As a result, she had trouble breathing. Continue reading

On June 25, run for kids with arthritis and their families!

Join Cassie and Friends for their Scotiabank 5K & Half Marathon Team to raise money for all the kids affected by juvenile arthritis and other rheumatic diseases in BC.

Cassie and Friends Team for Scotiabank 5k for kidsOver the last 10 years, Team Cassie and Friends has laid it all on the course for kids with arthritis. Their team of 100 runners and walkers, from toddlers to grandparents, have transformed the lives of kids and families diagnosed with Juvenile Arthritis and other rheumatic diseases in BC and across Canada.

But, there is still so much more we can do to support and connect families, fund critical research and raise awareness – we hope you’ll join Cassie and Friends! Make a gift or sign up to be a part of their team. Cassie and Friends has created a virtual run for those who are unable to attend the Vancouver event.

Click here to register. Please use charity pin codes (all child registrations will be reimbursed): 5K -17CFS5K or Half Marathon– 17CFS21K

If you have any questions, please feel free to contact Jennifer Wilson at jennifer@cassieandfriends.ca or visit cassieandfriendsrun.ca or David Porte at david@porte.ca

Thank you for being a friend! Continue reading

Fibre rich diet may prevent arthritis knee pain in older adults

According to a recent study, diets rich in fibre from plant-based foods can lower the risk of developing knee pain and stiffness due to osteoarthritis (OA) in older adults. Fibre-rich diet can also lower cholesterol, contribute to a better-controlled blood sugar, and a healthier diet.

Sources of dietary fibreOsteoarthritis is a common type of arthritis that affects more than 3,200,000 Canadians – about 1 in 10. Osteoarthritis is caused by the breakdown in cartilage in the joints. Cartilage is a protein substance that acts as a cushion between bones in joints, allowing joints to function smoothly. The disease can affect any joint, but hands and weight-bearing joints—including the spine, hips and knees—are most often affected. Other joints, like shoulders, elbows, and ankles, are less likely to be affected unless the joint has been damaged by injury.

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Do you know a volunteer with arthritis who deserves recognition?

The Qualman-Davies Arthritis Consumer Community Leadership Award

Banner for Qualman-Davies Award for volunteer with arthritis

 

Do you know a person with arthritis who has, or is, providing leadership in the community and deserves recognition for their valuable volunteer work? We encourage you to help us celebrate their contributions by nominating them for the Qualman-Davies Arthritis Consumer Community Leadership Award.

The Qualman-Davies Arthritis Consumer Community Leadership Award was created in 2014 to recognize one person’s contributions to helping Canadians living with the disease to be heard in decision-making processes that affect millions. That’s what Ann Qualman and Jim Davies did as early pioneers in arthritis advocacy in Canada. Their tireless and selfless efforts helped millions of Canadians.

Nomination process:

To submit a nomination, please follow the four steps listed below.

  1. Obtain the prospective nominee’s consent to be nominated prior to submitting this form.
  2. Click here for the nomination form. If you create a separate nomination document, please use the headings provided on the Nomination Form PDF for ease of review by the award adjudication committee.
  3. Provide the completed nomination form to the nominee for their review for accuracy and obtain their signature on the document.
  4. Submit the form to feedback@jointhealth.org

The application deadline is August 31, 2017. Each submission will be reviewed by the award adjudication committee and scored on a points system. The winner and their nominator will be notified by the adjudication committee chair by September 8, 2017. The award will be bestowed in person at the Arthritis Alliance of Canada’s Annual Conference Gala, this year taking place on October 26, 2017 in Vancouver, British Columbia (award recipient’s expenses will be covered).

About Ann Qualman and Jim Davies Continue reading

May is ankylosing spondylitis month! A Q&A session with Michael Mallinson

May is ankylosing spondylitis month and to celebrate, we would like to share this question and answer session Arthritis Consumer Experts did with Michael Mallinson, President of the Canadian Spondylitis Association.

Picture of Michael - President of Canadian Ankylosing Spondylitis Association

Q: Hi, Michael. Can you tell us about your organization?
A: The Canadian Spondylitis Association is a nonprofit national patient association formed in April 2006 to support and to advocate for those suffering from ankylosing spondylitis and associated spondyloarthritis diseases including psoriatic arthritis, enteropathic arthritis and reactive arthritis. Our goal is to be the leader in Canada providing support, education and advocacy for the spondyloarthritis patient community

Q: What are some misconceptions about ankylosing spondylitis?
A: Most people are unaware that AS strikes young people. The typical age of onset is between 17 and 35. Although people are aware that arthritis is a women’s disease, they are surprised when they found out AS has a significantly higher prevalence among men.
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The cost of non-adherence to prescribed medications

Pills and needles to portray medication nonadherenceAn article published in the Annals of Internal Medicine estimated that non-adherence resulted in approximately 125,000 deaths and at least 10 percent of hospitalizations, costing US health care system $100 and $289 billion a year.

The article reports that “studies have consistently shown that 20 percent to 30 percent of medication prescriptions are never filled, and that approximately 50 percent of medications for chronic diseases are not taken as prescribed. The review found that for people who do take prescription medications, they only take about half the prescribed doses.

Researchers from Northwestern University found that one-third of kidney transplant patients don’t take their anti-rejection medications. Other studies show that 41 percent of heart attack patients don’t take their blood pressure medications and only 50 percent of children with asthma use their inhalers as prescribed.

In an article in the New York Times, Dr. Bruce Bender, co-director of the Centre for Health Promotion at National Jewish Health in Denver, explained: “When people don’t take the medications prescribed for them, emergency department visits and hospitalizations increase and more people die. Non-adherence is a huge problem, and there’s no one solution because there are many different reasons why it happens.”

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It’s World Day for Physical Activity! Let’s deskercise!

April 6 is World Day for Physical Activity, let’s take a moment to recognize that the words “physical activity” and “outdoor” or “gym” are not synonymous. There is a perception that working at an office means being chained to your desk and inevitably becoming a “desk-potato”.

Deskercise, or desk exercises, are simple and short exercises that you can do at, or near your desk with tools available at the office or exercise gadgets you can easily bring to the office. Something as simple as walking can have significant health benefits. Walking a minimum of about 10 city blocks each day could reduce the risk of dementia, and potentially improve cardiovascular and joint health in the long term. To learn more about walking and its benefits, click here.

Woman doing arm stretch exercise

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

 

Here are some ways you can exercise at work: Continue reading

Adaptive clothes for people living with arthritis and other medical problems

Wardrobe full of clothesPutting on clothes can be a difficult task for people living with arthritis, limited mobility and range of motion, and other medical problems.

For someone living with arthritis, simple tasks, such as buttoning a shirt, tying shoelaces, or pulling up a zipper, are made difficult by joint pain and inflammation. Caregivers can help in this aspect but it can be a demeaning, intimate and tricky task for both parties. People with Alzheimer or dementia may also have trouble in dressing themselves. They may forget how to put on a shirt or which way the buttons face.

One way to make things easier is to use adaptive clothes. Adaptive clothes have details like Velcro tabs instead of zips and buttons, as well as adjustable or removable components that help to save time and reduce the risk of injury. “More importantly, this type of clothing improves one’s comfort and bolsters self-esteem,” said Ms. Punithamani Kandasamy, a registered nurse and caregiving trainer at Active Global Specialised Caregivers. In an interview with the Straight Times in Singapore, Ms. Punithamani explains how different types of adaptive apparel and footwear can be useful for both the wearer and the caregiver. Below is an excerpt from the interview: Continue reading

Call for patient input on biosimilar etanercept (Sandoz) for RA, AS, and pJIA

Stickman with megaphone calling for patient inputDo you have rheumatoid arthritis, ankylosing spondylitis or polyarticular juvenile idiopathic arthritis or care for someone who does? We need your valuable input.

Health Canada defines biosimilars (sometimes referred to as subsequent entry biologics or SEBs) as biologic medicines that are similar to, and would enter the market after, an approved originator biologic (such as Enbrel®).

Unlike the more common small-molecule drugs, biologics generally exhibit high molecular complexity, and are sensitive to changes in manufacturing practices. Biosimilars are not identical to their originator products because their chemical characteristics cannot be precisely duplicated during the manufacturing process. Therefore, biosimilars may have unique efficacy, immunogenicity, and safety profiles that are different from their originator.

The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for biosimilar etanercept for the treatment of rheumatoid arthritis, ankylosing spondylitis and polyarticular juvenile idiopathic arthritis. The originator biologic, or reference product, is etanercept (Enbrel®).
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