Today, the Spotlight on Arthritis Superheroes is shining on an organization called Cassie and Friends Society for Children with Juvenile Arthritis and Other Rheumatic Diseases.
Cassie and Friends started with a little girl named Cassie. Juvenile arthritis became a part of Cassie’s family in September of 2006 when Cassie, then 20 months old, wouldn’t walk when her parents took her out of the crib. Eventually, Cassie was diagnosed with juvenile idiopathic arthritis. Her parents were shocked with the diagnosis, as they believed arthritis was only a disease for the elderly. They soon learned how common arthritis is in children.
Big data from electronic health (e-health) records reveals useful information about arthritis such as the connection between allergies and uveitis in juvenile arthritis and an increased risk of epilepsy in people living with autoimmune diseases. According to an article in the Wall Street Journal, “big data generally refers to information that is too large – terabytes to petabytes or even exabytes of memory – to process with older standards of processing power.”
A recent study shows that patient information collected during routine checkups help doctors improve patient care and provide better diagnosis for their patients. A routine checkup can reveal X-rays, blood tests, written observation, and treatments or diagnosis prescribed by the doctor. When researchers access this data, the data is disassociated with the name of the patient but can still provide valuable information that reveal environmental, social, and medical factors that may influence the quality of patient care.
Below are some successful case studies: Continue reading
Thursday’s Tri-City News highlighted Otto Kamensek’s art exhibit Shard’s, Bone Deep, which ends on May 8, at the Port Moody Arts Centre. It encourages the public to visit the exhibit in person to understand what it’s like to have lived through 40 years of chronic arthritis. The exhibit features Otto’s clay artwork and has about a dozen pieces of work, including an interactive piece where Otto created a homunculus puzzle with magnets for visitors to assemble and play with.
Otto’s work conveys the pain behind arthritis, which now affects 4.6 million Canadians and has no cure. The artist was a nine-year-old boy in Grade 3 when he was diagnosed with systemic juvenile idiopathic arthritis. Upon the onset of the disease, he experienced swelling and stiffness in his toes, feet, knees, hands, and neck. By Grade 4, his arthritis affected his body and mind, causing him to go from obese to skin and bones – most likely caused by depression. Arthritis ran in his family’s blood – his great aunts on both his mother’s and father’s sides had arthritis, with no access to medical treatments such as those available to Otto in the 1970s.
It was when the Burnaby resident had four long-term in-patient stays in rehabilitation centres that he mastered his craft. Despite getting new knees and hips and trying a myriad of medications, alternative therapies and exercise techniques to gain relief, he discovered art was a way to manage his stress and a “distraction of daily life”. Art also helps him stay active in the arthritis research community and advocate for arthritis awareness.
Otto’s exhibit demonstrates what it’s like – physically, mentally, emotionally and spiritually – to live with arthritis.
I was very honoured to visit his exhibit in person while he was there and even got a personal tour of his art studio. My favourite piece was Angry Joint – a piece where there were angry heads poking out from the knee and ankle of a right leg. Each head, big and small, had its own expression; some showing anger while others showed pain and frustration. The heads marked the location of Otto’s flare-ups, both past and current. As a person interested in the arts, I asked, “Are these expressions and faces based on people you know who experience arthritis daily?” His response was an unexpected one, “I don’t really like to do that. I draw my expressions from a reference of 300 plus cartoon expressions and modify it according to the medium of my art.”
Every detail in Otto’s clay pieces and exhibit had a message – from what he chooses to glaze in each piece to the way the room is lighted to the occasional glimpse of colour in certain parts of each piece. Despite the heavy matter of living with arthritis, there was one piece that showed a glimpse of hope – Arthritis Still Life. This particular piece was of a table and a chair. On the table, small details like a spilled pill bottle with pills pouring out of it, rehabilitation weights, and a pill bottle cap with arrows indicating “twist this way to open” attest to the complications one experience when they have arthritis. Beside the chair is a cane. A lonely vase with a red rose bud in it represents the hope that drives Otto’s passion for art and arthritis advocacy.
Otto hopes that his exhibit will generate conversation about the prominence of arthritis and its lack of government health funding. As the Tri-City News report, 93 cents for every Canadian is spent annually on arthritis research versus $1,000 for cancer and AIDS each. He says in an interview: “Arthritis is not sexy. It gets the lowest funding but has the highest number of disability in the country. There’s an inequality there.” Please support arthritis by visiting Otto’s exhibit and joining the conversation through twitter via @pomoarts and #HelpingHands.
Arthritis Consumer Experts had the privilege of interviewing Otto Kamensek, an artist-in-resident at the Port Moody Arts Centre. He talks about his life with juvenile idiopathic arthritis and how art has helped him during his journey. Enjoy this interview and don’t miss Otto’s Shards, Bone Deep ceramic art exhibit, which will run until May 8. Do you know who has given you a helping hand? Otto does and wants you to share your story via the Twitter hashtag #helpinghands.
Today’s Arthritis Olympics Challenge: Go bicycling! To follow the Canadian Paralympic Team’s progress, please visit the CBC’s Paralympics page here.
Did you know?
Olympian speed skater Kristine Holzer had juvenile rheumatoid arthritis since the young age of 13. Kristine wanted to remain active and chose to participate in low impact sports like rowing and speed skating. She was second place at the 1998 United States Senior National Team Trials. When she did not get the spot to compete in the 1998 World Rowing Championships, she started her training to become a speed skater at the age of 24. She attended the 2006 Winter Olympic Games and earned 27th place in the 3000 meters and placed fifth place with team USA in the women’s Team Pursuit.
Olympian Kristin Armstrong was diagnosed with osteoarthritis in her hips in 2001 at age 28. She used cycling as a way to manage her arthritis and stay active with her arthritis. She accomplished her greatest athletic moments after her diagnosis, including three world championship medals and a gold medal at the 2008 Olympics in Beijing and the 2012 Olympics in London.
BC PharmaCare is looking for your input on tocilizumab for the treatment of polyarticular juvenile idiopathic arthritis (pJIA).
Tocilizumab (Actemra®) is now being considered for coverage under the British Columbia Ministry of Health’s PharmaCare program. By filling out a questionnaire on a website called Your Voice, you can provide feedback about tocilizumab for the treatment of polyarticular juvenile idiopathic arthritis (pJIA)
You can give input if you are a B.C. resident and have pJIA, a caregiver to someone with pJIA, or if your group represents people who live with pJIA. Continue reading